About

Equal not special is a community of people who celebrate life’s diversity.Our contributors are:-

Ekie

ekie is a twenty-something disability advocate who considers herself more of a New Englander than an American. She has a non-verbal learning disability, NLD, with a side of depression, anxiety, and sensory processing disorders. Her interests include disability rights and advocacy, reading, walking, dogs and children. Although she recently completed her master’s degree in disability advocacy, she is currently unemployed, so if any readers have connections to jobs in the disability field in the Boston area, she would love to hear about them and from you, as well as from anyone who cares to chat. AIM name: Ekie84.

Wheelyfast

WheelyfastMy name is Karen and I’m 24 years old and I live in Australia with my parents and dog whose name is Flea and some goldfish. I attend the local TAFE, and university. I love to read and write, watch movies, listen to music and I’m a motor sports fanatic. My favourite colour is purple. I have a type of cp called Spastic Quadriplegia. it affects my legs mostly and also my arms to a lesser degree. I am not affected by the CP intellectually in anyway although there seems to be an automatic assumption by the community that I am- that’s a post for another day. I use a wheelchair to get around all the time and have both an electric and a manual chair.

Terriblepalsy

TerriblePalsySometimes, your worst fears – when realised – are not so bad after all. Life changes, but not always in a negative way. Terriblepalsy writes about a family coming to terms with having a child with a physical disability and the journey along the way …

Jodi

My name is Jodi Devine and I am 32 years of age. I live in Sydney, NSW, Australia. I am a proud mum to Thomas Linton Devine who was born prematurely at 28 weeks in February of 2005. He spent a total of 105 days in RPA’s NICU. Thomas had many problems and continues to have issues today, primarily his bilateral hearing loss. The hearing loss was diagnosed through the State Wide Infant Screening Hearing SWISH test which he failed twice, resulting in an automatic referral to a children’s hospital for an audio brain-stem response (ABR) test. He was initially diagnosed with a severe-profound hearing loss which was eventually ‘reduced’ to a severe loss and now it is moderate.

I struggle with coming to terms with his hearing loss EVERY DAY (as well as his height, weight, gross-motor and fine-motor skills, his vision etc). I over analyse EVERYTHING he does and I mean EVERYTHING.

I am also a primary school teacher in the public system and last year, after nine years of classroom teaching, I moved into the area of learning difficulties and took on the role of Support Teacher Learning Assistance (STLA). I cried almost every day in the first term. I would watch students and think, “How will Thomas cope with this when he reaches school age?”

But life goes on and Thomas is living proof of that for me, reminding me to take each day as it comes – however hard that may be.

JFinn08

I live in Brisbane, Australia,  with my husband and two children.  I have a 9 year old son and a daughter who is almost four.  Due to complications with her birth my daughter has Severe Quadriplegic CP.  After the delivery it took the medical team 10 minutes to resuscitate my beautiful baby and on day five she was diagnosed with CP by an MRI.  She spent 10 days in NICU (5 of those days on a ventilator) and then 2 weeks in Special Care.  The Head of NICU told us he doubted she would live past 3 months but it is almost 4 years on and she has changed our lives in a way we could have never imagined. There have been many difficult times along the way but the good times definitely outweigh the bad.  I would say that the hardest thing in dealing with her disability is lack of support, equality and inclusion.

Activevoice1

 

 

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4 responses to “About

  1. Hi. I was reading through some of your excellent posts and wondered if we might exchange links?

    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 website, which can be found on http://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.

    • Milagros

      Omg after all these years I just came across this post. I hope that snowdrop is very successful. I truly hope that you have reached the USA. I too have a child who had brain injuries after he was born prematurely. He is 25 years old now. As a very young mother at the time, him being my first child and doing it a lone I never thought that I was smart enough to help my son. All I had was three things about me that help me. One, my profound love for him, two, my faith in God and three, my determination to never give up on him. I didn’t have the time, support or money to do what you did but I read many books about the brain. One thing I understood without a doubt was that the brain is an amazing organ. I grab on to the fact that the brain whiled some parts can be damaged other parts can learn some of those sensory skilks that you might have lost. At least that was my conclusion. I grabbed on to the fact that a new brain injured is far better than an old brain injured. You see at time this is all I had my love, faith, determination and my conclusions about the brain. My son was born 28 weeks premature, and my labor day was a complete nightmare. Even after 25 years I cry about it and hope noone ever has to experience it like me or have their child experience it like my son. Well after a two days of negligence, and 3 months in NICU my son was released from the hospital diagnosed as basically a vegetable. You see in those first days of his life many things did not happen which cause him to have two severe bleeds in his brain. The bleeds and oxygen caused vision problems, severe cerebal palsy, hydrocephalus, lungs clasping etc. Again in a nutshell I was told he would not have a productive life. But like you I took what I knew and worked with my son. I took him to many doctors and challenged things that I felt would not work for him. I was fully ready for him after 4 months in the hospital. I had PT, OT theraphy scheduled for my home the day after he arrived home. I read about things to increase his vision, I would not use baby language, I would speak to him face to face. I did so many things that doctors felt sorry for me because they thought I was to determined. Well, he is 25 and not a vegetable. He is a very, very active 25 year old. He sees( not 100% from one eye) butvnot considered legally blind, he has two Vp shunts, he has cerebal palsy(at one point able to use a walker but as he got older he uses a wheelchair more) he speaks, reads, very social and plays all the sports in his one hand drive sports wheelchair. Your story is relevant today has it was written in 2008. Not sure if you will see my post but I am so happy I came across yours 6 years later. I hope your organization is a success. Maybe I can introduce you to an incredible doctor that belives in helping individuals with disabilities and always looking for new ways.

  2. Glee

    Many, many people with disabilities all over the world do not admire Christopher Reeve. He did not ever fight for the rights of people with disabilities to equity. He only ever sought a cure and was promised many unreal things by the experts. He perpetuated the idea that all we need is a “cure” and everything will be all right.

    Many people who acquire their disabilities later in life are destroyed by the endless “hope” for a cure. They continue to feel inadequate while they have their disability and continue with the endless hope. They never settle into being disabled and getting on with it. This is sad to say the least and doesn’t contribute to an accepting society.

    Please don’t link to this film and Richard, I would advise you to research what people with disabilities really think about it before you promote it.

    It’s not inspiring, it’s deadly.

    cheers
    Glee

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