Hi everyone.i hope you are all ok.
I am 36,from Manchester UK,and have had grand mal epilepsy, and many status seizures,my whole life.
I am also classic autistic and non verbal-I mostly communicate through proloquo2go ,with mild learning (intellectual) disability,quite severely physically disabled due to damage to my spine and spinal nerves from over restraining.
I have had small but very built up brain injuries caused by my epilepsy since my seizures started happening,and also my autistic self stimulation behaviors (banging my head),I am prescribed padded helmets because of both things,but I have no short term or working memory anymore.
I used to attend the specialist residential/day college-the david lewis centre,which is for autistic learning disabled epileptics (so you have to have them all),and it was the most amazing place in the world I have ever seen,unfortunately I live a bit to far out now to carry on going but it’s cthe first time in my life I felt accepted and accommodated, if I had a seizure whilst on a ASDAN towards independence course for learning disabled adults in my local mainstream college,I was isolated from everyone for causing disruption and then told to ‘do one’,in a much more polite way.i was also bullied by the non disabled kids,even though I always had two support staff with me.
At the DLC, you were put before your disabilities,and most people wore a padded medical helmet,some students woud try to help the support staffs,assistance or tutor if someone had a seizure and we had a unofficial therapy dog called Mr Sparkles in the class with us.
My interests are animals,arts and crafts,DSLR photography (I am on Instagram as @autieartist if anyone wants to seem my work,I woud love to see other people’s work),Oldskool Thomas the tank engine,sensory equipment, going out for a drive-(i have a motability car my support staff drive),isability activism,coffee,music..and when covid wasn’t here I enjoyed going to the epilepsy friendly proper club night for adults with L/ID-under one roof.
Sorry I have posted way to much 🤣,because of my working memory I go on and on without realising,i have no short term memory either,I hate it when people say to me, “everyone has got that problem,I’d forget my head....” yes you haven’t got constant lack of no short term memory.
Or another one I hate- “I think you are faking your memory problems, you have an amazing long term memory....” , does anyone else have one they hate?🙂
Focal motor seizure disorder
Nighttime seizures advice required
newly diagnosed - tired and down
