am now completely,officialy an athlete of a cheshire special olympics GB swim team.
its just took a while getting it completed as the head coach has taken two of the athletes to america to compete.
cant wait.
Wednesday, 28 May 2014
Tuesday, 27 May 2014
epilepsy; its serious business
have gone two days without having a tonic clonic epileptic seizure,it seems the worst might be over.
have been suffering with severe epileptic cluster seizures for two weeks and have been in hospital multiple times,one time had had a trachea tube put down throat,and another bad time;attached to an IV and on every monitor going in resus [the intensive care of emergency medicine] due to suffering from quite severe tachy cardia after the seizures and not having come around due to having so many of them.
the heat seems to be a major trigger for them,and am not sure if they are directly causing them-which mum and dad seem to think because they saw it happen when was a toddler, or if the heat is causing stress and the stress is causing the seizures.
luckily the weather has changed from heat waves to colder weather,its a common difficulty for people with autism to control their body temperature but that hasnt been looked at as doctors in that area of medicine arent disability specialists.
have been increasingly suffering with the seizures ever since had had epilepsy medication halved to just over one thousand mg whilst was detained in greenways intelectual disability hospital,though doctors didnt have this in their notes,used to be on the maximum possible doseage of tegretol.
have been refered to the neurologist again,but if they request yet another bloody EEG am never having another one as far as live,last time had had one to see whether severe challenging behavior was being caused by the epilepsy [it wasnt] they had to keep using a special knife to cut off the super glued on electrodes then reaplying them several times a day for three days because had had so many challenging behaviors due to being put in a different environment and in a different routine, the neurologist said it was the worst damage he has ever seen to a scalp,still have a patch on head now which hair wont grow through.
have been suffering with severe epileptic cluster seizures for two weeks and have been in hospital multiple times,one time had had a trachea tube put down throat,and another bad time;attached to an IV and on every monitor going in resus [the intensive care of emergency medicine] due to suffering from quite severe tachy cardia after the seizures and not having come around due to having so many of them.
the heat seems to be a major trigger for them,and am not sure if they are directly causing them-which mum and dad seem to think because they saw it happen when was a toddler, or if the heat is causing stress and the stress is causing the seizures.
luckily the weather has changed from heat waves to colder weather,its a common difficulty for people with autism to control their body temperature but that hasnt been looked at as doctors in that area of medicine arent disability specialists.
have been increasingly suffering with the seizures ever since had had epilepsy medication halved to just over one thousand mg whilst was detained in greenways intelectual disability hospital,though doctors didnt have this in their notes,used to be on the maximum possible doseage of tegretol.
have been refered to the neurologist again,but if they request yet another bloody EEG am never having another one as far as live,last time had had one to see whether severe challenging behavior was being caused by the epilepsy [it wasnt] they had to keep using a special knife to cut off the super glued on electrodes then reaplying them several times a day for three days because had had so many challenging behaviors due to being put in a different environment and in a different routine, the neurologist said it was the worst damage he has ever seen to a scalp,still have a patch on head now which hair wont grow through.
Monday, 12 May 2014
a 'new' diagnosis
have finaly come across the assessment that was carried out whilst was sectioned at greenways LD assessment & treatment acute hospital,and discovered something surprising.
as regulars to the blog know,am living in the UK and what we call learning disability is what america calls intelectual disability.
was rediagnosed using the ICD10 from the UK definition of learning disability to mental retardation, and it also said mild mental retardation whereas previously had been told was under severe LD, because people were unable to seperate having severe autism from LD so had always assumed was under the severe LD bracket.
am not bothered in any form but just wish had known because have been using that label on self, have never really questioned what have been told by experts.
heres the assessment info and result forms.....though it was jan the twentyith had finaly ended up getting discharged on,they have also been edited by social services LD team to remove all personal information because this form is actualy being used to join a special olympics club swim team and the SS dont want super personal info on it.
am missing quite a few diagnoses to.
and have personaly edited the names and stuff out that do not want posted on here-
http://cdn.imghack.se/images/6a43bdf9cfa35096564d0b36869bc97a.jpg
first page of the assessment
http://cdn.imghack.se/images/38526d6a97ed0a88992108d26611f6c3.jpg
the diagnosis.
so,am now able to OFFICIALY call self intelectualy disabled or learning disabled;under the UK definition, am certainly not going to refer to self under the painfuly offensive mentaly retarded though, have got to much self respect for that.
thanks so much to L for bringing this form over today,will be great to finaly start competition swimming.
as regulars to the blog know,am living in the UK and what we call learning disability is what america calls intelectual disability.
was rediagnosed using the ICD10 from the UK definition of learning disability to mental retardation, and it also said mild mental retardation whereas previously had been told was under severe LD, because people were unable to seperate having severe autism from LD so had always assumed was under the severe LD bracket.
am not bothered in any form but just wish had known because have been using that label on self, have never really questioned what have been told by experts.
heres the assessment info and result forms.....though it was jan the twentyith had finaly ended up getting discharged on,they have also been edited by social services LD team to remove all personal information because this form is actualy being used to join a special olympics club swim team and the SS dont want super personal info on it.
am missing quite a few diagnoses to.
and have personaly edited the names and stuff out that do not want posted on here-
http://cdn.imghack.se/images/6a43bdf9cfa35096564d0b36869bc97a.jpg
first page of the assessment
http://cdn.imghack.se/images/38526d6a97ed0a88992108d26611f6c3.jpg
the diagnosis.
so,am now able to OFFICIALY call self intelectualy disabled or learning disabled;under the UK definition, am certainly not going to refer to self under the painfuly offensive mentaly retarded though, have got to much self respect for that.
thanks so much to L for bringing this form over today,will be great to finaly start competition swimming.
realising a painful past through film
last night had watched the autism film; the black balloon; http://www.imdb.com/title/tt0865297/ for the first time and it was very painful and difficult to watch from the start.
the character in it with autism;'charlie' is pretending to be a severely autistic teenager,was just like him as a child and adult;except was not understood and treated kindly by mum or dad until adulthood because of early wrong diagnosis [the doctors blamed mum and said because there were no signs of solid brain damage it wasnt severe autism nor any other organic condition] and their strict catholic religeon which made them feel the autism was posession by the devil for mum or dad sinning,or something like that.
had had every behavior that 'charlie' shows in the film,and still do;apart from smearing which was one of the behaviors that the intelectual disability hospital managed to wean self off of doing regulary through four months of an extreme/negative form of ABA.
'charlie' is hated by his brother,he is absolutely resented by him,even to the point his brother smashes something supposed to be loved by him [his SNES console],his brother woud try to hide the fact he is 'charlies' brother whenever anyone from his school saw them together,he truly was ashamed of his autistic brother.
this is what really pains self,as it is exactly the same experience of mine growing up with a sister who did exactly the same things as the brother, was resented by her because she felt she coud never bring her friends around into our house,she was so ashamed of her sister she woud denie she had one and woud rip and break things of mine to get back at autistic behaviors.
of course she eventualy started trying to understand when she studied degree level pyschology and there was a unit purely based on classic autism,and over the years we became like friends-like the boys in the film,but it is still very painful to think the existance of mine was resented for so long,including infant and junior school where was beaten by teachers and the head teacher every day for behaviors and difficulties that had no control over,it was a highly confusing and distressing world to be in own world and continuously brought out of it with physical abuse and rough restraint slammed onto tables or into the walls by the teachers,and to be dragged home by the wrist and get even worse treatment off dad.
had really related to the film,and feel its the best film representation of autism have ever seen; at least of the severe spectrum anyway but cant help feeling have lost childhood,not to autism but to the people who shoud have cared for self.
the character in it with autism;'charlie' is pretending to be a severely autistic teenager,was just like him as a child and adult;except was not understood and treated kindly by mum or dad until adulthood because of early wrong diagnosis [the doctors blamed mum and said because there were no signs of solid brain damage it wasnt severe autism nor any other organic condition] and their strict catholic religeon which made them feel the autism was posession by the devil for mum or dad sinning,or something like that.
had had every behavior that 'charlie' shows in the film,and still do;apart from smearing which was one of the behaviors that the intelectual disability hospital managed to wean self off of doing regulary through four months of an extreme/negative form of ABA.
'charlie' is hated by his brother,he is absolutely resented by him,even to the point his brother smashes something supposed to be loved by him [his SNES console],his brother woud try to hide the fact he is 'charlies' brother whenever anyone from his school saw them together,he truly was ashamed of his autistic brother.
this is what really pains self,as it is exactly the same experience of mine growing up with a sister who did exactly the same things as the brother, was resented by her because she felt she coud never bring her friends around into our house,she was so ashamed of her sister she woud denie she had one and woud rip and break things of mine to get back at autistic behaviors.
of course she eventualy started trying to understand when she studied degree level pyschology and there was a unit purely based on classic autism,and over the years we became like friends-like the boys in the film,but it is still very painful to think the existance of mine was resented for so long,including infant and junior school where was beaten by teachers and the head teacher every day for behaviors and difficulties that had no control over,it was a highly confusing and distressing world to be in own world and continuously brought out of it with physical abuse and rough restraint slammed onto tables or into the walls by the teachers,and to be dragged home by the wrist and get even worse treatment off dad.
had really related to the film,and feel its the best film representation of autism have ever seen; at least of the severe spectrum anyway but cant help feeling have lost childhood,not to autism but to the people who shoud have cared for self.
Saturday, 10 May 2014
helping mencap and social services to educate a hospital on intelectual disability
this coming monday am going along with the UKs national intelectual disability charity; mencap, plus a buddy of mine-whose a fellow service user of the social services intelectual disability team... PLUS the intelectual disability team themselves to help educate a whole hospital on ID.
we both have severe communication impairments;his being much worse so it will be a challenge to get our views across,am going to be getting a new laminator this weekend hopefuly to make new symbols to help us and it will also hopefuly remind them that getting a book of symbols in every ward and making sure all frontline staff know about it shoud be a minimum;there is a book of symbols in accident and emergency but very few of them know of it.
cant wait to do this as have got a lot of history with the hospital;mostly bad though was born there thirty years ago to,when was born;they told mum was going to be a violent child because of the fact am red haired and they also said woud have a very low pain threshold,ahhhh the eighties.
we both have severe communication impairments;his being much worse so it will be a challenge to get our views across,am going to be getting a new laminator this weekend hopefuly to make new symbols to help us and it will also hopefuly remind them that getting a book of symbols in every ward and making sure all frontline staff know about it shoud be a minimum;there is a book of symbols in accident and emergency but very few of them know of it.
cant wait to do this as have got a lot of history with the hospital;mostly bad though was born there thirty years ago to,when was born;they told mum was going to be a violent child because of the fact am red haired and they also said woud have a very low pain threshold,ahhhh the eighties.
Friday, 2 May 2014
pimped out rabbit mansion
this is the rabbits home to be;a eight foot by four foot runaround run,a properly secured eight foot run-hutch runaround connector tube with cat flap things on both ends to shut at night,and a double level hutch.
its a rabbit mansion.
we havent put mesh under the run yet as we are playing wait and see,not all rabbits will burrow plus for some reason some muppet built the garden ontop of concrete near the top so its impossible to do that.
dad has built it all apart from the run,the support staff did that,but dad paid for all of it.
heres a picture of the whole setup just before the connector pipe got joined up with the hutch;
its a rabbit mansion.
we havent put mesh under the run yet as we are playing wait and see,not all rabbits will burrow plus for some reason some muppet built the garden ontop of concrete near the top so its impossible to do that.
dad has built it all apart from the run,the support staff did that,but dad paid for all of it.
heres a picture of the whole setup just before the connector pipe got joined up with the hutch;
accessing a hospital with autism & intelectual disability
was in hospital two days ago to have two teeth out and fillings done,as someone who has severe challenging behaviors from autism & ID [have mentioned this many times on the blog and elsewhere but ID is diagnosed as LD in the UK and what the US calls LD is what the UK calls learning difficulties,confusing eh?] am given all dental treatment under general anaesthetic.
have been stressed about this for months but especialy recently as have got big physical medical issues at the moment including the highly painful and not pain controled lumbar spinal injury, any dental work triggers the trigeminal neuralgia which is a severe facial nerve condition that is also known as the suicide disease because of how painful it is so have got a bloody big right to be worried.
the trafford ID team and the special needs dentist of mine had been preparing this for a while, regulary visiting to explain with symbols and easy read information,discussing what will happen and the path we will take into the hospital and was put first on the operation list because of the level of behaviors that result from waiting.
the day finaly came and we finaly drove to the hospital,but the the driver of the two support staff hadnt a clue how to get into the back entrance of the hospital so we ended up the wrong way down a one way street and some old woman in a car waving her fists at the staff.
was given a private side room,and allowed to wear own clothes instead of the hospital clothing because of sensory and change issues.
the anaesthetist came in for a visit to say hi-she is a specialist in anaesthetising people with ID,and it turned out already knew her from past visits in the years gone by.
then one certain CSW madam from the trafford ID team came in to support as well,and was really greatful she was there to help calm and stop self from kicking off as was getting very bad with all the waiting,so yeah-thanks L,am really greatful for rushing to get to the hospital.
eventualy we went down and they kept the environment as calm as possible and the nurses and everyone was really nice,was given the canula and IV fluids hooked up,then the general anaesthetic to-can remember ending up fighting and being partly pinned down to stop from pulling at arm when the GA went in because it felt like a shock up arm,then woke up in recovery with that familiar disgusting taste in mouth,the madam;L was there.
it was extremely painful and was given sixty mg of codeine,am greatful they understood,am fed up of people not taking any pain of mine seriously enough because am not able to communicate pain or physicaly show pain.
was then allowed to take the rest of the morning medication;had been made to take most medications of mine at six am that day,but now was finaly able to take the naproxen which also helped with the pain.
had quickly recovered and was desperate to get out of there due to anxiety,coudnt wait for the dentist to finish the next patient so was allowed to be discharged,they said will want to go to bed when get home but just spent the day doing gardening on a raised flower box and watching dad put the rabbit run and connector pipe together before collapsing on the sofa in front of series four of breaking bad.
the day surgery team rule, pity all the hospital staff cant be like that, which is why canot wait to help train on severe autism and ID them soon.
heres some photos of just waking up in recovery,and one taken just as we got home;
have been stressed about this for months but especialy recently as have got big physical medical issues at the moment including the highly painful and not pain controled lumbar spinal injury, any dental work triggers the trigeminal neuralgia which is a severe facial nerve condition that is also known as the suicide disease because of how painful it is so have got a bloody big right to be worried.
the trafford ID team and the special needs dentist of mine had been preparing this for a while, regulary visiting to explain with symbols and easy read information,discussing what will happen and the path we will take into the hospital and was put first on the operation list because of the level of behaviors that result from waiting.
the day finaly came and we finaly drove to the hospital,but the the driver of the two support staff hadnt a clue how to get into the back entrance of the hospital so we ended up the wrong way down a one way street and some old woman in a car waving her fists at the staff.
was given a private side room,and allowed to wear own clothes instead of the hospital clothing because of sensory and change issues.
the anaesthetist came in for a visit to say hi-she is a specialist in anaesthetising people with ID,and it turned out already knew her from past visits in the years gone by.
then one certain CSW madam from the trafford ID team came in to support as well,and was really greatful she was there to help calm and stop self from kicking off as was getting very bad with all the waiting,so yeah-thanks L,am really greatful for rushing to get to the hospital.
eventualy we went down and they kept the environment as calm as possible and the nurses and everyone was really nice,was given the canula and IV fluids hooked up,then the general anaesthetic to-can remember ending up fighting and being partly pinned down to stop from pulling at arm when the GA went in because it felt like a shock up arm,then woke up in recovery with that familiar disgusting taste in mouth,the madam;L was there.
it was extremely painful and was given sixty mg of codeine,am greatful they understood,am fed up of people not taking any pain of mine seriously enough because am not able to communicate pain or physicaly show pain.
was then allowed to take the rest of the morning medication;had been made to take most medications of mine at six am that day,but now was finaly able to take the naproxen which also helped with the pain.
had quickly recovered and was desperate to get out of there due to anxiety,coudnt wait for the dentist to finish the next patient so was allowed to be discharged,they said will want to go to bed when get home but just spent the day doing gardening on a raised flower box and watching dad put the rabbit run and connector pipe together before collapsing on the sofa in front of series four of breaking bad.
the day surgery team rule, pity all the hospital staff cant be like that, which is why canot wait to help train on severe autism and ID them soon.
heres some photos of just waking up in recovery,and one taken just as we got home;
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