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a qsn about employment
Thu, 01/20/2005 - 09:19Hi Everyone,
I've only been here since Nov. '04 when my infant son was diagnosed with epilepsy. I went through a grieving process where I really had to "let go" of so many of my assuptions and expectations for his life.
One of the things that I thought would be ok for him was employment. I was being hopeful that he could become an engineer (software, civil, or mechanical) like his dad or an architect or even a statistician (like me). But I've seen a couple of posts recently where people have mentioned living with epilepsy for decades and suffering with not being employable.
I know this might be a dumb question, so forgive my ignorance if you can. I'm just starting out on this journey and I'm trying to understand what my son will be facing.
qsn: what is the issue about employability? Is it discrimination that keeps a person from working or is the epilepsy disabiling in some instances?
When I check the SS website, it said that if the epilepsy isn't controlled within certain parameters by medications, then the seizure disorder is considered a disability and my son would qualify for benefits. Did I misinterpret this guideline?
Any information you could offer would be so appreciated.
Thank you.
Comments
RE: RE: RE: RE: a qsn about employment
Submitted by LeeMc on Sat, 2005-01-08 - 11:28
Hello everyone - Lee here. Cassandra has given some excellent advice on memory and learning. Others have provided honest and realistic opinions and answers on expectations and the future. We all have had our worlds rattled by epilepsy - for ourselves or someone we love. We all are also a wealth of strength and knowledge for each other.
30 years ago I had no idea what to expect in my future. I was diagnosed and spent the next several years grieving in the bottom of a bottle. It solved nothing but even while doing that I was determined that I not be treated any differently from anyone else and I probably worked twice as hard to prove myself in any job or opportunity I had. I succeeded in getting and staying sober (21 years now) and in obtaining several challenging and interesting jobs over the years. I even reached management positions in some jobs before chosing to move in another direction for a while.
It is 30 years later now and medicine has changed a lot. There are new drugs and new options - and things keep changing. We know that the human mind is the the greatest thing on earth and even when it is throwing a tantrum (having a seizure) it is still the most complicated and facinating thing there is. New information will be learned, new solutions and treatments found. A diagnosis of epilepsy in this day and age is not a deal breaker - it is just another damn bump in the road.
Yes, people learn in different ways. Some learn by reading, some by watching & listening, some by doing and some by combinations of any or all of these. That is why you see more education programs now days that provide the same information in all formats (ie: a book or workbook, videos about what the book said, hands on practice or doing and even discussion of the whole thing). Whatever works! If something isn't working see if it available in another format and try that. Keep trying until you find the one that works for you.
We are all capable of anything we set our mind to - given the help and support to believe in ourselves enough to achieve it. That is the most important thing that any parent can give to their child - that support, self-confidence and the opportunity to be whoever they think they want to be.
Love to you all and Have a Safe and Happy New year
Hello everyone - Lee here. Cassandra has given some excellent advice on memory and learning. Others have provided honest and realistic opinions and answers on expectations and the future. We all have had our worlds rattled by epilepsy - for ourselves or someone we love. We all are also a wealth of strength and knowledge for each other.
30 years ago I had no idea what to expect in my future. I was diagnosed and spent the next several years grieving in the bottom of a bottle. It solved nothing but even while doing that I was determined that I not be treated any differently from anyone else and I probably worked twice as hard to prove myself in any job or opportunity I had. I succeeded in getting and staying sober (21 years now) and in obtaining several challenging and interesting jobs over the years. I even reached management positions in some jobs before chosing to move in another direction for a while.
It is 30 years later now and medicine has changed a lot. There are new drugs and new options - and things keep changing. We know that the human mind is the the greatest thing on earth and even when it is throwing a tantrum (having a seizure) it is still the most complicated and facinating thing there is. New information will be learned, new solutions and treatments found. A diagnosis of epilepsy in this day and age is not a deal breaker - it is just another damn bump in the road.
Yes, people learn in different ways. Some learn by reading, some by watching & listening, some by doing and some by combinations of any or all of these. That is why you see more education programs now days that provide the same information in all formats (ie: a book or workbook, videos about what the book said, hands on practice or doing and even discussion of the whole thing). Whatever works! If something isn't working see if it available in another format and try that. Keep trying until you find the one that works for you.
We are all capable of anything we set our mind to - given the help and support to believe in ourselves enough to achieve it. That is the most important thing that any parent can give to their child - that support, self-confidence and the opportunity to be whoever they think they want to be.
Love to you all and Have a Safe and Happy New year
RE: RE: RE: RE: a qsn about employment
Submitted by mollybright on Sun, 2005-01-09 - 13:07
Thank you! Thank you, Cassandra! Your ideas are great! They encourage me to expand my efforts to help Claire have order and structure so that when her memory fails the routines are a backup. You brought up a safety concern I have, too: Claire loves to cook, but always forgets to turn the burner off. Always. Right now she can't cook unless I am supervising, but I'd love to figure out a way to remind her to turn the stove off so that she could have more freedom. What works for you?
Thanks again for taking the time to share your ideas! It was very helpful to read your post.
Back to making lists!
Molly
Thank you! Thank you, Cassandra! Your ideas are great! They encourage me to expand my efforts to help Claire have order and structure so that when her memory fails the routines are a backup. You brought up a safety concern I have, too: Claire loves to cook, but always forgets to turn the burner off. Always. Right now she can't cook unless I am supervising, but I'd love to figure out a way to remind her to turn the stove off so that she could have more freedom. What works for you?
Thanks again for taking the time to share your ideas! It was very helpful to read your post.
Back to making lists!
Molly
RE: RE: RE: a qsn about employment
Submitted by cstrain on Sun, 2005-01-02 - 20:08
hi molly
well, strategies....hmm, can i remember one? lol, just kidding. for one thing, it was never recognized when i was a teen, so it is only in the past few years i've been trying to cope with the memory problems and find strategies. i adapted by becoming a creature of habit. For example, car keys....they ALWAYS have to be in the same spot, or else i will foget where i put them. Same with glasses and purses. Hooks on the wall near the door work best for me. high school was hard, but in univerisity i adapted well i think. I Have an agenda and write down the assignments beginning of term , BUT, have found that a monthly calender (not the week-by-week ones, typically given in high schools) works best for me so i can see what is coming in the next weeks. If i'm not in school, agendas do not work - i forget to write in them. I write notes to myself everywhere if it is important for me to remember something.
for me, if someone tells me something it goes usually right out the other ear. i have to be able to see instructions to be able to remember them. Perhaps your daughter is like this...maybe give it a try. For example, if you wish for her clean the bathroom, post a list of what she should do. Don't be angry if she says she can't remember....believe me, it is like a total loss when i forget something! sometimes i watch a movie and do not remeber it at all in six months time! it's all new to me!
However, the strange thing is, I CAN remember the oddest things. I can drive in a large city without maps, just by recognizing where i am. when i do my readings for school, what works best for me is to take notes as i am reading, then go to the lecture, and then go back and read the readings again. I don't have the capability to remember what the readings said during the lecture & therefore cannot connect it together.
I am on depekene & i think this is the majority of the problem. I would encourage you to try to help your daughter with life-skills....that being how to live safely without a good memory (ie a way to turn off the stove after cooking, etc). I also think there is testing availiable, perhaps through the school system, and would definately encourage you to see what sort of learner she is because this will help the both of you.
it is good you are able to recognize this early on and help your daughter. it doesn't have to be completly disabling if you find coping mechinisms.
Hope this helps
cassandra
hi molly
well, strategies....hmm, can i remember one? lol, just kidding. for one thing, it was never recognized when i was a teen, so it is only in the past few years i've been trying to cope with the memory problems and find strategies. i adapted by becoming a creature of habit. For example, car keys....they ALWAYS have to be in the same spot, or else i will foget where i put them. Same with glasses and purses. Hooks on the wall near the door work best for me. high school was hard, but in univerisity i adapted well i think. I Have an agenda and write down the assignments beginning of term , BUT, have found that a monthly calender (not the week-by-week ones, typically given in high schools) works best for me so i can see what is coming in the next weeks. If i'm not in school, agendas do not work - i forget to write in them. I write notes to myself everywhere if it is important for me to remember something.
for me, if someone tells me something it goes usually right out the other ear. i have to be able to see instructions to be able to remember them. Perhaps your daughter is like this...maybe give it a try. For example, if you wish for her clean the bathroom, post a list of what she should do. Don't be angry if she says she can't remember....believe me, it is like a total loss when i forget something! sometimes i watch a movie and do not remeber it at all in six months time! it's all new to me!
However, the strange thing is, I CAN remember the oddest things. I can drive in a large city without maps, just by recognizing where i am. when i do my readings for school, what works best for me is to take notes as i am reading, then go to the lecture, and then go back and read the readings again. I don't have the capability to remember what the readings said during the lecture & therefore cannot connect it together.
I am on depekene & i think this is the majority of the problem. I would encourage you to try to help your daughter with life-skills....that being how to live safely without a good memory (ie a way to turn off the stove after cooking, etc). I also think there is testing availiable, perhaps through the school system, and would definately encourage you to see what sort of learner she is because this will help the both of you.
it is good you are able to recognize this early on and help your daughter. it doesn't have to be completly disabling if you find coping mechinisms.
Hope this helps
cassandra