Friday, 15 January 2010
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Autism, Epilepsy and Living with Uncertainty
To All the Moms along the Trail,My thirty-six year old son, Brandon has had to learn how to live with uncertainty. He has untreatable epilepsy, and never knows when his next seizure will occur. He has no warning as some people do, and doesn’t know what brings them on. To make matters worse, his neurologist told us that no matter what he does, and no matter what medication he takes he will never stop having seizures.
Two years ago, we sought alternative treatment (B.E.S.T. technique), because we weren’t about to give up. Since having these treatments, Brandon’s seizures are less frequent and less severe. I am happy to say he is making great progress. These treatments are also helping him in other areas of his life, including his social skills.
Brandon has taught me how to befriend uncertainty. He has been falling down from seizures for over twenty-seven years. When you watch someone you love fall down without any warning, you have a choice to allow it to strengthen you, or to allow it to weaken you and tear you apart.
Having seizures are tough enough to deal with, but another huge problem is that the stigma still exists. Many people believe that if you have epilepsy you are possessed by demons or the devil. I am here to do what I can to educate others. I write about it in my book, Raising Brandon, and I talk about it when I give presentations.
The beauty of this story is my son, Brandon has a wonderful positive attitude. Even after having a grand mal seizure (also known as tonic-clonic) the next day he is up and raring to go. When I call Brandon the day after a seizure to see how he feels he always says, “Mom, It’s a new day.” Brandon continues to be my finest teacher.
Check out The B.E.S.T. technique: http://www.Morter.com
Happy trails to you,
Amalia
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About the Author
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- From: amaliastarr
- Name: Amalia Starr
- About Me: Mother, Motivational Speaker, Author, Transition and Independent Living Coach, and Founder of Autism Independence Project. As an independent living coach, Amalia specializes in empowering parents to move through one of the most difficult times: “letting go,” a time when their children are transitioning to adulthood. In her workshops she helps parents release their emotional blocks and walk through their fears in order to assist their children to reach their full potential and gain maximum independence. She knows about “letting go”: Amalia's youngest son, Brandon is thirty-nine years old. Brandon has autism, intractable epilepsy, and severe learning disorders. Amalia led her son to independence when the professionals deemed it impossible. Brandon has been living on his own for the past fifteen years. As a speaker, her authenticity and firsthand experiences are inspiring, informative, and filled with HOPE! Read Amalia's book, Raising Brandon.
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Comments (10)
Your son sounds like a brave man with an inspiring spirit. I've had friends with epilepsy and they struggled mightily with it. I admire your son's positive outlook.
I've seen some programs on public TV about the use of brain surgery to treat epilepsy. It looks like the medicine is getting better, but it still seems like a scary thought.
It's so good to hear of someone having to deal with that and STILL having a positive attitude. My sister has epilepsy, and despite being told she would always have seizures no matter the medication, after a few, she went on trileptal and hasn't had one in years, so doctors have a tendency to be wrong about such things. I feel that there is usually SOMETHING out there to help most sufferers of epilepsy, whether it's medication or some alternative treatment. So it's good that you've found something that helps your son.
And I know how hard it is to see someone you love in such a situation... I witnessed my sister's very first seizure, and for a number of years when we went to the same school, everytime an ambulance pulled up to the school, I knew she'd had another seizure, and it was very hard to understand and cope with that kind of thing as a kid. It's scary.
But I'm glad your son has such a great attitude. When dealing with any chronic illness, it definitely helps to have a good attitude.
Best wishes to you and your son! <3
It is wonderful that Brandon has the verbal skills to articulate his feelings and positive thoughts. I hope he is able to write a book some day if he isn't already not working on one.
@AGreatPerhaps@xanga - Thank you so much for sharing your story about your sister. Great news that she hasn't had a seizure in a long time. Yes, we will not give up until we find something that works. These seizures take a lot out of Brandon. He is over 6ft so when he falls he falls hard. His positive attitude is remarkable, and he just wants to get better and stop hurting himself. He has been falling for nearly thirty years. We just hope and pray one day he will be seizure free.
All the best,
Amalia Starr
@amaliastarr - I hope so too.
@zisixi@xanga - Thank you for your comment. Did you know that 25-35% of people who have epilepsy even when taking their medications will continue to have seizures. Brain surgery will not work for patients like Brandon who have generalized epilepsy. Alternative treatment seems to be the answer. Brandon is dong better as I stated in the post, but of course he wants to be seizure free. We hope and pray that will happen one day soon. I hope your friends will also be seizure free soon.
Thanks again,
Amalia Starr
P.S. You may be getting this reply twice, because the first one just vanished. I hope you have a wonderful weekend.
@zisixi@xanga - Thank you so much!
@P1AutismMom - Interesting you should say that. Brandon has an easier time conveying how he feels with me, because he feels safe. But with the rest of the world he really struggles. Just a few days ago Brandon finally wrote his first e-mail, I talk about it in a nearly written post. That was huge for him. So for now, writing a book doesn't seem possible, but I did ask him if he would like to answer a few questions to put into my next book that I am working on now. He said he will have to think about it. It takes him time to come around, and I won't need it for a while. People are always asking about him, so it would be nice to have something written by him.
Take care,
Amalia Starr
Have you considered an epilepsy companion dog? The dog would sense when a seizure is about to happen and alert your son. Possibly he could have time to get in a more safe position.
@elspeth47 - Brandon loves dogs, but where he lives they do not allow animals. He also feels that taking care of an animal would be too much for him. When he was growing up our family dog, Archie was his best friend. I appreciate your comment.
Best,
Amalia Starr