The Reality of Seizures.

This blog entry is not for everyone.  It's not a rant.  It's not a plea for pity.  It is not meant to be disrespectful to any Epilepsy organization, nor any Public Service Announcement type project.  I applaud efforts of all to truly try and make a difference. This is merely my own view.  My own honesty.  My own reality check in "Life with Autism....and Seizures".

Reality that today hit me in how it's so distorted. So commercialized. So watered down.  Much like Christianity. True Christianity is Bible-based and non-disputable. Yet all around me it's disputed. It's distorted. As is morality. True American morals and values of being honest, self-respecting, non-murdering, non-lying, non-cheating morality. Watered down. Defended. Acquitted.  I also see "awareness" in the Autism and Epilepsy world I live in, as something everyone is "so aware of" that it's cute. It's popular. It's a money-maker more than a research-funder.  It's rarely portrayed as a crisis because I guess to show the true reality and true crisis, it would be too horrible, no one would want to watch it.

Try living it.

I guess cute sells. Reality doesn't.  One needs to look no further than a magazine cover to see that.  To this day, and for everyday always, I will respect Kathie Lee Gifford and Hoda for doing their morning segment one day with no makeup.  For that one morning, I felt TV got it right.  Really right.  I'm longing for the day awareness campaigns get it right as well.

Click here to see segment.

Which brings me to this "seizure first aid" video. A very good project, very factual.  Please click on the link, watch it listening carefully, then we'll continue....

Click here to view seizure first aid video.


I guess my issue with awareness programs like that, is that they're not real.  They may be real people, that may represent what a seizure could look like for some, but it's too cute.  It's too watered down.  It's the typical Today Show hostess portrayal.  And not the "no make up day" portrayal of Kathie Lee and Hoda.

I truly feel there's a disservice done in not portraying reality.  I will get negativity from this, and that's ok.  It's never stopped me before, and I doubt it will make me edit a thing here.  People will judge me in showing my son like this, and that's ok too. My reply is simply that reality will help my son, being politically correct won't. Showing seizures that are not too bad to watch, will not help those like me who simply cannot endure watching another real one. But must.

And before you watch the below video of one of my son's real seizures, I want to point out a few things from the PSA video above.

1)  Stay Calm. When you watch the video of my son having this seizure, think about how calm I'm feeling as I see those sometimes daily, sometimes multiple times daily - seizures.  Staying calm is what you do while waiting in traffic. Not something you do when your child is choking, thrashing, turning blue, and there is not a thing you can do to stop it.  My son has had seizures for years. Watching that PSA would make one think I could watch my son's without blinking an eye. As if I was sitting down having tea with a friend.  No.  That's not reality.  Reality is that each one is still the first. Reality is that I cry and beg and plead with God to make them stop, and just know that this one will be the last. So remain calm?  No, I can't say that I've ever done that despite how seasoned I am at watchign them.

2)  Make sure nothing can harm them.

Look at this picture of the hole in my son's bedroom wall.  There is no way you can make sure nothing will harm them.  Seizures happen anytime, anywhere.  To think that you can have a safe environment for seizures is not reality.  No, the reality is that where there are seizures, there will most likely be harm.  This hole in the wall perfectly fits around Brandon's head.  He was standing up, a seizure hit, and knocked him in the wall as he was fallling down.

3)   Turn their head so they won't choke, is what the video says to do.  I think when you watch my video, you will see how well that works.  No matter where I turn his head, or if I can only raise it because he's thrashing too hard to turn him, he chokes.

4)  Time the seizure. The only thing you have time to do unless you are wearing a watch, is count how many years of your life are slipping away by having to watch your child go through that.


5)  And their ending statement "...now you know that making sure someone who is having a seizure stays safe is really not a big deal..."

Watch this video now, and then we'll continue on.


.

Did that seem like not a big deal to you?  Did his expression make you feel that simply being aware of what to do for seizures is "no big deal"?  Did that seem simple to you?  Do seizures seem like "common sense" to you now?  Did that look anything like the cute video you watched first?

Did you notice that there wasn't a "circle of friends" around me to help? No. Because most often I'm all alone when he has one. In the early morning after Todd has gone to work and I have to find a way to get an adult-sized child off a hard floor into a soft bed. I must find a neighbor who is home or call my son from school to help me get him out of the tub because I can't bear to just leave him there until he's able to stand on his own.

What you didn't see in that video, is that he fell backward hitting his head on that tile before I could get to him. What you didn't hear after I stopped that video to help him better, is that for five minutes after it he was choking, gasping for air, trying to catch his breath, - yes, from choking on his saliva despite his head being raised during the seizure.

Reality: I started recording seizures after a Neurologist told me that because they could never capture one on an EEG, that he might not really be having any, it might be simply "behavior".  He's doing that on purpose. Did he look like he was doing that on purpose to you?

Reality.  It's been over a decade since my son's first seizure, and I know nothing more about the cause or treatment of them now, than I did then.

Reality:  Seizures are deadly. My son has nearly died from one because he fell backward under a sprinkler and nearly drowned by the water spraying in his mouth before we found him. CPR and God saying it wasn't his time - prevented that.

Reality:  Is that I feel there is no urgency about them. If they were the flu, something that is truly something to stay calm about, then there would be a fast-tracked vaccine to prevent them.  Lucky for me though, it was most likely a vaccine that caused them in the first place.

Reality:  I'm tired of living in air-brushed-awareness-world of Autism and Seizures that is cute and popular.

Reality:  If as much time, money, effort, intelligence was put into solving existing medical issues like autism and seizures, as was put toward creating more medical problems by making more vaccinations, -- my son's autism, and seizures, would be cured. Or at the very least better controlled, better treated.

Reality:  I'm tired of staying calm.

Reality:  My son deserves for there to be an outright riot to help him.

Question:  Where's the PSA for that?