Latest news on Lewis.

8. Aug, 2016

For many years epilepsy was associated with mental illness or even possession by devils. People with epilepsy were forbidden to marry or have children. Many became victims of Nazi eugenics programmes. To this day many people with epilepsy – sixty million worldwide – still live in fear of exposure.The Nazi persecution of persons with disabilities in Germany was one ... including mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism.

Our disability is a difference but our impairments are real. But consider how much lesser some of the effects of the impairments might be if the world was more accommodating and accepting of Epilepsy and invisible conditions.

Autism and Epilepsy.

Neurodiversity doesn't meant ignoring our challenges at the expense of our strength. Remember that the neurodiversity paradigm was started to counteract the opposite message: that "autism is an epidemic and Autistics burdens, marriage wreckers, worse than cancer" Neurodiversity is the diversity of human brains and minds – the infinite variation(difference) in neurocognitive functioning within our species. It is more than just autistics, it is anyone with a neurological difference (e.g. those with bipolar). It is an acknowledgement that our brains are wired differently but it should not be used to dismiss our very real challenges.It should also not be confused with the neurodiversity paradigm which is a perspective or a belief. The neurodiversity paradigm is a specific perspective on neurodiversity – a perspective or approach that essentially comes down to these three things (could well be more, this is just a summation):

1) Neurodiversity is a natural and valuable form of human diversity.

2) The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning is no more valid than the idea that there is one “normal” or “right” ethnicity, gender, or culture.

3) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics (e.g. power inequalities) that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture).

Guardianship.

I'm going through Guardianship Process at moment. An MHO presumes to know more about my Son. Isn't contesting but cannot make a decision!!! Ambiguous to say least. Why would caring parents suddenly just change!! Now I'm classed as an over protective mother. There is no justification at all your either 'overprotective' or just pick up a paper, or see on TV, some poor child has been neglected or far worse.

These frameworks and procedures need overhauled. They need brought into focus with real families issues and realtime. Look outside the tick box one size does not fit all. Decisions are and could be made wrongly on a person's ability and 'wellbeing' Don't prejudge families circumstances when the child and young adult is clearly cared for. My sons has lifelong medical needs and the one does not go without the other. You cannot omit this from reasoning. Why would Local Authorities think you can! Save the poor individuals who need the help and interventions.

Parent/Carers holidays are no different from any other day. Our coping mechanism's have to kick in. Hospital Appointments still to be adhered & attended to.

Adult Services. 

Our first taste of Adult Services....with Lewis this month. What a fiasco!! How is someone with supported & complex needs etc supposed to access this NHS..😠😠😠😠 He wouldn't have a clue. From Clinic to Clinic we went. Then to a Ward. Which was a Stroke Ward. Our appointment was for Orthotics Department re new AFO (leg brace). 

Holiday in the Malverns 2016.

We spent time in the Midlands seeing extended family. Lewis loves this. We booked a country cottage. Peaceful and Serene. Not a seizure in 2 weeks. Now, this could be because no stresses of every day life? Was fantastic..

Epilepsy knows no bounds and can happen at anytime. It's much more than a seizure for the person and family life. #epilepsyoutofthedarkages