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a qsn about employment

Thu, 01/20/2005 - 09:19

Hi 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: a qsn about employment

Submitted by mollybright on Sun, 2005-01-02 - 11:06

Hi SSSMom,

I'm the mother of a 13 year old girl who has been recently diagnosed with temporal lobe epilepsy.  I, too, am thinking ahead as to how my child can lead a full and independent life that is adapted to some of the changes I see her developing as a result of her epilepsy.  Until the onset of seizures (which seem to be controlled by Lamictal for now) she had a superior memory and was able to easily multi-task without being overwhelmed.  She was a straight A student and participated in a variety of activities.

She is still the vibrant, creative and intelligent person she has always been, but some things have changed.  She has regular minor memory lapses (For example, last night I asked her to bring water glasses to the table as we were getting ready to eat dinner.  She walked into the kitchen, stopped and stood there for a moment and then said, "Mom, what did I come into the kitchen for?".) She is given a homework assignment in school and can't remember ever knowing about it, even when she wrote it down. When she has homework in more than one subject, she becomes overwhelmed.  (Though with reassurance and a little structuring from me she can overcome her anxiety and complete her work.)  Her grades are good, but lower. We have had to cut back on her after school activities because she feels overwhelmed by more than one or two extra activites a week.

I don't know if it is the medication or the seizures, or some combination of both, which are affecting her.  While the changes are subtle and we are learning to compensate for them, they are interfering with her functioning.  It is not much of a leap to imagine how these changes in her functioning would interfere with many career choices. 

It is enormously difficult to see my talented daughter struggling at times and to think that she might not be able to fulfill her dreams.  Yet, we are finding that we can compensate.  Folks with E are amazingly resilient!  I am constantly inspired by my daughter's courageous acceptance of her condition and not letting it lower her expectations for herself.  With helpful teachers, more structure and a simplified life she is doing well.   Her current goal is to become a chocolatier and own her own candy shops/bakeries.  Given some of her challenges now (especially the memory lapses), I don't know if she would be able to do this alone, but if she had supportive co-workers or employees and she structured her work well enough I think she could achieve her dream.  In any case, she deserves every chance to try!

Unfortunately, no one can predict what course her epilepsy will take and whether she will be doing better or worse when the time comes to make these career choices.  I'm hoping we can be adaptive and find a way for her to have meaningful work in her area of interest, no matter what her E is like in her adulthood.

My encouraging thought to you is that just like my daughter is doing, your son will find his way.  He obviously has a loving, supportive Mom who will pass on hope and fortitude.  He also is part of, as you can see by this website, a huge and caring worldwide community.  What I am learning is that every person's experience with epilepsy is different and while there is nothing wrong with thinking ahead, your son is only an infant.  By the time he has to make a career choice (who knows where his unique talents and passions will lead?) you and he will have so much more information with which to make good decisions. 

Holding you all in the light,

Molly

Hi SSSMom,

I'm the mother of a 13 year old girl who has been recently diagnosed with temporal lobe epilepsy.  I, too, am thinking ahead as to how my child can lead a full and independent life that is adapted to some of the changes I see her developing as a result of her epilepsy.  Until the onset of seizures (which seem to be controlled by Lamictal for now) she had a superior memory and was able to easily multi-task without being overwhelmed.  She was a straight A student and participated in a variety of activities.

She is still the vibrant, creative and intelligent person she has always been, but some things have changed.  She has regular minor memory lapses (For example, last night I asked her to bring water glasses to the table as we were getting ready to eat dinner.  She walked into the kitchen, stopped and stood there for a moment and then said, "Mom, what did I come into the kitchen for?".) She is given a homework assignment in school and can't remember ever knowing about it, even when she wrote it down. When she has homework in more than one subject, she becomes overwhelmed.  (Though with reassurance and a little structuring from me she can overcome her anxiety and complete her work.)  Her grades are good, but lower. We have had to cut back on her after school activities because she feels overwhelmed by more than one or two extra activites a week.

I don't know if it is the medication or the seizures, or some combination of both, which are affecting her.  While the changes are subtle and we are learning to compensate for them, they are interfering with her functioning.  It is not much of a leap to imagine how these changes in her functioning would interfere with many career choices. 

It is enormously difficult to see my talented daughter struggling at times and to think that she might not be able to fulfill her dreams.  Yet, we are finding that we can compensate.  Folks with E are amazingly resilient!  I am constantly inspired by my daughter's courageous acceptance of her condition and not letting it lower her expectations for herself.  With helpful teachers, more structure and a simplified life she is doing well.   Her current goal is to become a chocolatier and own her own candy shops/bakeries.  Given some of her challenges now (especially the memory lapses), I don't know if she would be able to do this alone, but if she had supportive co-workers or employees and she structured her work well enough I think she could achieve her dream.  In any case, she deserves every chance to try!

Unfortunately, no one can predict what course her epilepsy will take and whether she will be doing better or worse when the time comes to make these career choices.  I'm hoping we can be adaptive and find a way for her to have meaningful work in her area of interest, no matter what her E is like in her adulthood.

My encouraging thought to you is that just like my daughter is doing, your son will find his way.  He obviously has a loving, supportive Mom who will pass on hope and fortitude.  He also is part of, as you can see by this website, a huge and caring worldwide community.  What I am learning is that every person's experience with epilepsy is different and while there is nothing wrong with thinking ahead, your son is only an infant.  By the time he has to make a career choice (who knows where his unique talents and passions will lead?) you and he will have so much more information with which to make good decisions. 

Holding you all in the light,

Molly

Re: RE: a qsn about employment

Submitted by masterdelve on Mon, 2008-04-14 - 22:38
master delve here sorry coulden't remember password just got back in the systum Molly on my earlyer post! the best thing is have your douters teacher get her to write down the homework asinment then put in the same pocket every time. then she'll get use to ding it. say on a note pad that she keeps in that packet-even a poket of her perse. If I helped in any way then maybe there is some good of this all!! helping others is rewording in nowing you made a diffrence in this word who beter to help than the young. with mutch care Master Delve

RE: RE: a qsn about employment

Submitted by masterdelve on Sun, 2005-01-02 - 15:08
dear molly. try a mini tape recorder for some memory loss problums have teachers write notes for homework you have a very good outlook for you douter she is very lucky to have a mom like you.have the teachers put the notes in a sierten pocket in her backpac. masterdelve

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