Today's #FridayReflections post: "Since today is Thanksgiving Day, write a post on the subject of gratitude."
My father suffered a traumatic brain injury during his service in World War II, which left him with lifetime seizures. Medication could not completely control them. Without the medication, he suffered from what was then called grand mal seizures-I believe the modern term is tonic-clonic. With medication, most of the seizures were downsized to what they then called petit-mal. Now, I believe,they would be called absence seizures. Whatever they were called, I saw some of the discrimination my Dad suffered.
But it didn't stop him from being a wonderful father. I have many treasured memories of him. My Dad used to love to watch houses being built. We were never able to afford one, but on Sundays, he would take me for walks and we would walk to houses under construction. Perhaps he would dream. I would listen to baseball games on a tinny transistor radio.
Thankfully, although some individuals with autism suffer from seizures, I have never seen my brother in law "Bil" have one. But, when he was young, he was suspected of having seizures. He was put on a medication, Depakene, that made him so sick that his mother took him off.
Today, the day after our American Thanksgiving I want to share the story of a mother who has a child with epilepsy - and how those with epilepsy can be taken from us at any time due to a condition that many of us have never even heard of.
It's a scary thing, these unknown countries that co exist with the countries of good health. I am grateful for the many good things in my life:
The people I spent Thanksgiving with.
The smell of roast turkey, the taste of eggnog.
The full bellies we had the opportunity to have.
I am grateful for Bil's physical health and the Internet that allows me to blog about him and about life in general. I am grateful that society has changed in Bil's fifty-something years of life, so that he is more accepted in society. Today I pause in gratefulness.
What are you grateful for?
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Friday, November 25, 2016
Tuesday, January 17, 2012
Another Awesome Advocate
I was pleased to discover that local autism advocate Gary French was written up in the Syracuse newspaper.
He hoped to study law but had to care for and advocate for his child with autism and a seizure disorder.
He assists other parents in their advocacy efforts.
And now, he is taking the case of his daughter to the Supreme Court.
Never underestimate the power of a parent of a disabled child.
I wish him the best of luck.
He hoped to study law but had to care for and advocate for his child with autism and a seizure disorder.
He assists other parents in their advocacy efforts.
And now, he is taking the case of his daughter to the Supreme Court.
Never underestimate the power of a parent of a disabled child.
I wish him the best of luck.
Thursday, November 3, 2011
Epilepsy and Autism
I encourage you all to read this post by a woman with a husband and children with epilepsy.
This is not an "autism" post but a lot of the information (it's a long post but worth it) would be of interest to family members of people with autism.
At one point in time Bil was suspected of having epilepsy but it turned out he (apparently) does not. However, it does seem that the rate of epilepsy in those with autism is higher than that of the general population.
I'll let this powerful blog post speak for itself.
This is not an "autism" post but a lot of the information (it's a long post but worth it) would be of interest to family members of people with autism.
At one point in time Bil was suspected of having epilepsy but it turned out he (apparently) does not. However, it does seem that the rate of epilepsy in those with autism is higher than that of the general population.
I'll let this powerful blog post speak for itself.
Saturday, October 1, 2011
Prince John and Bil
Whenever I watch a movie, my ears always perk up when I hear a story or link to a disabled person.
Tonight, finally, I got around to viewing the move "The Kings Speech". This award winning movie talked about the speech impediment of Prince Albert, the future King George VI who was the King of Great Britain during World War II. He was the father of the current Queen, Elizabeth II.
What I did not know about George VI (besides the fact that George was not his first name) is a little known historical fact that he had a severely disabled youngest brother, John, who died in 1919 at the age of 13. John was mentioned briefly in the film. As the fifth and youngest son of King George V, he would have been 5th in line to the throne.
John did not have autism. He had severe epilepsy, and died as the result of a seizure.
As was the custom of that day, John was kept out of the public eye, least an epileptic seizure bring shame to the Royal family.
Not too many years ago, that also would have been Bil's fate, even if he had been a member of the British Royal family. Especially sobering is the fact that many people with autism have problems with seizures (although Bil does not.). But Bil has never been hidden away.
Times have certainly changed.
Tonight, finally, I got around to viewing the move "The Kings Speech". This award winning movie talked about the speech impediment of Prince Albert, the future King George VI who was the King of Great Britain during World War II. He was the father of the current Queen, Elizabeth II.
What I did not know about George VI (besides the fact that George was not his first name) is a little known historical fact that he had a severely disabled youngest brother, John, who died in 1919 at the age of 13. John was mentioned briefly in the film. As the fifth and youngest son of King George V, he would have been 5th in line to the throne.
John did not have autism. He had severe epilepsy, and died as the result of a seizure.
As was the custom of that day, John was kept out of the public eye, least an epileptic seizure bring shame to the Royal family.
Not too many years ago, that also would have been Bil's fate, even if he had been a member of the British Royal family. Especially sobering is the fact that many people with autism have problems with seizures (although Bil does not.). But Bil has never been hidden away.
Times have certainly changed.
Friday, May 20, 2011
Epilepsy and Autism
Thanks to local advocate Sally Colletti, I have discovered a new resource for Binghamton parents of children with autism.
There is an article that briefly discusses autism and seizures. There is definitely a connection, and with that, I need to tell a story about Bil's past. (I don't want to reveal details about Bil's health to protect his privacy, but I believe the following is not a betrayal of my policy.)
Years ago, Bil had an evaluation (one of several he has had during his lifetime.) As a result, Bil was put on a medication. As a family member of mine had epilepsy, I know a little bit (just a little bit) about epilepsy, and I immediately recognized the name of this medication. It was a medication given to people who suffered from seizures. This puzzled me because, to the best of my knowledge, I had never seen Bil have a seizure.
I know very well that not all seizures are "obvious" but I've never seen Bil staring into space for a few seconds, or other symptoms of what are called "absence seizures". (Years ago, when this evaluation was written, it probably would have been called petit mal seizures, which is the name I knew them by in my childhood.) Nor have I seen evidence of tonic clonic seizures, the type many people not in the "epilepsy community" associate with epilepsy. In my childhood, these were called "grand mal" seizures.
Of course I am a layperson, and I am mostly familiar with the type of seizures my family member had. (they were never fully controlled by medication.) But my point is: I had never had any reason to suspect this with Bil.
So I asked my mother in law about this. She told me an interesting story (deleting the term"epilepsy"). Bil was put on this medication and why was never explained to her. He started having strange symptoms, which (as it turned out) were side effects of the medication. My mother in law, at some point, saw a TV show, associated the symptoms with the medication, stopped it, and Bil was fine after that.
I was told later on, in further investigation (by an advocate) that this was probably a case of misdiagnosis.
It still is true, however, that epilepsy and autism are interconnected. A pity. Epilepsy is so feared (and rightfully so-it does have the capability of killing people) but is also dreadfully misunderstood - and for a family member to face both epilepsy and autism: well, it is just another burden for families.
There is an article that briefly discusses autism and seizures. There is definitely a connection, and with that, I need to tell a story about Bil's past. (I don't want to reveal details about Bil's health to protect his privacy, but I believe the following is not a betrayal of my policy.)
Years ago, Bil had an evaluation (one of several he has had during his lifetime.) As a result, Bil was put on a medication. As a family member of mine had epilepsy, I know a little bit (just a little bit) about epilepsy, and I immediately recognized the name of this medication. It was a medication given to people who suffered from seizures. This puzzled me because, to the best of my knowledge, I had never seen Bil have a seizure.
I know very well that not all seizures are "obvious" but I've never seen Bil staring into space for a few seconds, or other symptoms of what are called "absence seizures". (Years ago, when this evaluation was written, it probably would have been called petit mal seizures, which is the name I knew them by in my childhood.) Nor have I seen evidence of tonic clonic seizures, the type many people not in the "epilepsy community" associate with epilepsy. In my childhood, these were called "grand mal" seizures.
Of course I am a layperson, and I am mostly familiar with the type of seizures my family member had. (they were never fully controlled by medication.) But my point is: I had never had any reason to suspect this with Bil.
So I asked my mother in law about this. She told me an interesting story (deleting the term"epilepsy"). Bil was put on this medication and why was never explained to her. He started having strange symptoms, which (as it turned out) were side effects of the medication. My mother in law, at some point, saw a TV show, associated the symptoms with the medication, stopped it, and Bil was fine after that.
I was told later on, in further investigation (by an advocate) that this was probably a case of misdiagnosis.
It still is true, however, that epilepsy and autism are interconnected. A pity. Epilepsy is so feared (and rightfully so-it does have the capability of killing people) but is also dreadfully misunderstood - and for a family member to face both epilepsy and autism: well, it is just another burden for families.
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