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Treatment for Children with Multiple Disabilities
by Andrew Brereton
My name is Andrew Brereton and I was the father of a child who suffered with profound brain injuries, which caused a mixture of symptoms, - some of quadriplegic cerebral palsy and some of autism, although neither of those diagnoses do justice to the true nature and severity of his brain injuries! Unfortunately, Daniel passed away four years ago, suffering a series of brainstem strokes. We always knew that for someone with his level of disability, the length of his life would be severely limited, but unfortunately, knowing that something is going to hurt, doesn't actually stop it hurting when it happens!
Daniel was born at the North Staffordshire Maternity Hospital in Stoke –On – Trent on the 4th September 1987 and within a few short weeks was diagnosed with cerebral palsy. We were warned by the paediatrician that the fact he was able to make such an early diagnosis indicated a high degree of severity of the condition. – He was not wrong and within a few weeks it became clear that I would be forced to give up my work as a chemist in the ceramics industry, in order to help my wife, Janet look after him. - Daniel rarely slept, he could stay awake for days and nights on end. This was an impossible situation for my wife to deal with alone and soon she was struggling to cope, whilst I went out to work.
Although in the early months of Daniel’s life, I was largely at home, I became increasingly interested in Daniel's problems and in human cognitive processes, so I decided to enrol for a university degree in psychology / child development at our local college of higher education, which is part of Manchester Metropolitan University. The structure of my chosen courses meant that I only had to be on campus part of the time, so I was still largely available to help with Daniel's care. Three years later I passed my degree with upper second class honours, my final dissertation being on the subject of 'Programmes of rehabilitation and their effects upon brain - injured children and their families.'
The three years of my degree studies paid off in more than one way, - not only did they foster in me a greater understanding of the difficulties Daniel faced, they also highlighted some useful techniques which we could employ in treating some of those difficulties; some of these techniques really had an impact upon his quality of life. My success in my studies also further fuelled my interest in this field and so I enrolled on further courses, eventually gaining post graduate qualifications in ‘child development,’ 'language and communication impairments in children,' and ultimately an MSc in cognitive neuropsychology. I was also fortunate to be involved in several research projects such as the construction of neural networks to mimic cognitive processes in children, the design and employment of sociocultural learning programmes with children who experience learning difficulties and the design and employment of various communication therapies for children who experience language and communication difficulties.
My studies at university also opened our eyes to alternative therapeutic interventions which were available and consequently, over time, we not only travelled the globe to seek help for Daniel's difficulties from these approaches, but I was given the opportunity to study at various clinics. We studied and employed alternatives at clinics in the UK and internationally. Some of these approaches we found useful and productive, - others we did not. In fact, more accurately, I would say we found some techniques within most approaches to be beneficial, whilst finding many other techniques within each approach to be of no benefit. We also found the intensive philosophy of some alternatives to be detrimental to Daniel and to us as a family. I guess what I am saying is that there is an element of truth in all approaches, but no one approach has a monopoly on the facts!
Our employment of many of these alternative approaches created a great deal of hostility within the ranks of the medical professionals who treated Daniel and over the years of his life we were subjected to a constant tirade of enmity. We arrived at the conclusion that this was as a consequence of their perceived loss of powers; - they seemed to think that any approach which we chose which was out of their circle of control, was a direct threat to their perceived competence, and they acted accordingly towards us. In truth, all we were trying to achieve was greater quality of life for Daniel by enhancing his developmental prospects. We found it amazing that we were subject to so much criticism for seeking answers to Daniel’s difficulties from a group of people who possessed no answers to those problems themselves.
Although throughout his lifetime, Daniel remained very severely handicapped, our efforts at helping him were far from fruitless. At birth, Daniel was cortically blind and deaf. This meant that although his eyes and ears were working normally, his brain was not interpreting the sensory information, which they were collecting. However, gradually through our utilisation of alternative methodologies, we restored both his vision and his hearing. This may sound small beer in the global picture of overwhelming global handicap, but for Daniel it meant that he could now see his Mum and Dad; - that he could see, hear and begin to interact with his two younger brothers. – This revolutionised Daniel’s whole being.
Sadly, Daniel passed away four years ago last month. We miss him terribly and there will always be a massive hole in our lives. How do you get over the death of a child? However, the snowball of enthusiasm and interest, which he created in me, - interest in helping to solve the problems many children face, rolls on.
Using all of the knowledge, which my son passed to me, (despite all my qualifications and research experience, he remains my most astute tutor), I am in the process of setting up a child development consultancy called 'Snowdrop.' It is in its infancy, but it aims to take all the knowledge and experience amassed over the years and to utilise it for the benefit of children and families like ourselves. Snowdrop provides programmes of neuro-cognitive stimulation for children who suffer developmental problems. Those problems may express themselves as more global difficulties such as cerebral palsy or autism, or more specific difficulties such as dyslexia, dyspraxia, or specific language impairment. Treatment is carried out by the family in the child's own home. Our ‘programmes’ are variable in their intensity, depending upon the particular problems displayed by the child and are designed to fit in with what the family can practicably achieve without placing them under an undue burden of stress. We place a strong emphasis on learning through play. We believe that the best environment for development to have a chance of taking place is one where both child and family are happily motivated and jointly focussed on the same objectives.
Although Snowdrop is based in the UK, we do envision having an appeal internationally. We are a 'not for profit' organisation and are hoping to establish Snowdrop as a charity later this year. Obviously, in order to help children and their families, we need as high a profile as possible and consequently, as many links as possible to achieve a high search engine ranking.. This is the reason I have written this short account in the hope that someone like yourself might be interested enough to help us. All we want to do is to be of service to children and their families. In this way, my son's life and everything he taught me about brain injury and the developmental problems children face will have not been wasted. The founding of Snowdrop also proves something else. – Love surpasses death.
In recognition of the fact that many families cannot travel vast distances in order to obtain treatment for their child, whether due to practical constraints, financial constraints, or other reasons, we are now offering ‘distance advice.’ Parents write or send an email to us briefly outlining their child’s condition. We then ask them to fill out a detailed developmental questionnaire. When we have analysed the questionnaire and asked any supplemental questions we may have, we then devise a programme of developmental activities based upon the information we have gathered. It is stressed that it is then the responsibility of the parents to allow the child’s doctor to see the programme so that he may suggest amendments in light of any medical problems the child may have. We find this system works quite well. I remember as a parent, the vast amounts of money I spent on travel and accommodation expenses to get Daniel to clinics both in the UK and internationally.
Please peruse our initial rudimentary website, (under construction), which can be found on www.snowdrop.cc.
I have also published two books, one titled, "Cerebral palsy: A guide to understanding and helping your child", and another titled, "Autism: A guide to understanding and helping your child". These can be accessed through the website.
Andrew Brereton can be reached at:email@example.com.
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