New Article

When Lizzie was about two and a half years old, she was put on Valproic Acid (Depakote) to control her seizures.  It worked for about two and a half years, and then she had to go off of it because she entered into medicine toxicity.  It was a pretty traumatizing event, and I've looked at Valproic Acid like it's the devil ever since.

Today I read an article that links Valproic Acid to reduction of brain volume.  We noticed cognitive delay starting to develop about six months after Lizzie started taking Valproic Acid.  After reading this article, it makes total sense.

Link to article is here.

On the R-Word.

“Hey, Ms. N, what’s wrong with your fan?” I look to the fan in my classroom that he’s talking about, and I can’t find anything wrong with it. The student says, “It looks autistic. You know…retarded.”


In my mind, I’m thinking, “Really? You chose to say that?” The other students have started to chastise him, and I’ll take a moment later to be proud of them for that. I take a really deep breath to calm myself, and I address the student.

“You probably shouldn’t say things like that-, “I start.

“Oh, I didn’t mean it badly. Like, if another kid is being mean to a kid that has special issues, I’m going to stand up for that kid.”

“But you did mean it badly. You were insinuating that my fan is in some way stupid or deformed, and instead of saying that, you chose the words ‘retarded’ and ‘autistic’. You see, my daughter is autistic. There’s nothing stupid or deformed about her. Using those words to mean stupid or deformed is unacceptable, and until you can increase your vocabulary, you’re just as bad as someone that is being mean to a kid with ‘special issues’ because you’re continuing a belief that those people are somehow less than everyone else. Improve your vocabulary. Don’t let me hear you say that again.”

He continues to try to explain why what he said is okay. I interrupt him again.

“Look, you’re taking a word that describes a person that had no choice over his/her lot in life, and you’re making that word mean something different than it should. You’re taking a word that in the past has meant ‘special needs’ and you’re making it into something negative. It’s not okay. Change your perspective, and change your vocabulary.”

Another student looks at him and says, “I told you. “

I know this is an issue that’s been around for awhile. I mean, there’s an initiative to end the use of the word “retarded” as a way to describe something as stupid (http://www.r-word.org/). It’s not okay. Ever. There’s this widespread belief in the world that we need to teach tolerance.

Here’s my question: Why don’t we teach acceptance instead?

If we’re preaching/teaching tolerance, there’s an underlying thread of thought that suggests that what you’re tolerating is somehow wrong. Are autistic children wrong in their existence? What about people with Down’s Syndrome? Addison’s disease? Doose Syndrome? Epilepsy? There is nothing wrong with these people’s existence, and teaching people to tolerate these issues feels wrong to me.

Lizzie is struggling with this right now. She’s being bullied at school, and I know she wishes that her classmates would just accept her. Heck, for all my preaching about teaching tolerance, I think she’d welcome their tolerance if it meant they’d leave her alone.

Life Goes On, Doesn't It?

Life really does plug along, doesn't it?  Daily life keeps happening, regardless of what's going on in your personal life.  That's not to say that people don't care that you've been through something traumatic.  They do, but they've got their own stuff to deal with, too.  The hardest part after this last bought of seizures has been learning to live as if our hearts hadn't just been ripped out of our chests.

Let me say this, though.  Liz is fine.  She's handled this better than I can even put into words.  There have been days when she has had lots of questions, but that's completely normal.  We bought two books to help her understand her seizure disorder, and we read them together.  The first is called Mommy, I Feel Funny by Danielle M. Rocheford.  I'd read about this book on the Epilepsy Foundation's parents' forum, and I knew that if she continued to have seizures when she got older, then that would be a definite purchase. 

It was a fantastic book, and it helped her understand what happens to her during her seizures.  It also helped her understand that there are always people around her that will take care of her.  If you have a child with a seizure disorder, this book is an absolute must-have for your personal library.

We also purchased, Taking Seizure Disorders to School: A Story About Epilepsy by Kim Gosselin.  We read this one together, too.  It's geared towards an elementary school classroom.  I put her name in it, and sent it to school, since her nurse and school counselor were planning on speaking with her class to help them understand what goes on with her.

As for the rest of us, I think that our sense of peace and normalcy has been taken from us.  Adjusting to our new normal is going to be the hardest thing about all of this.  I don't think I'd forgotten how things were when she was younger.  I think I became complacent.  I know I couldn't have done anything to stop that seizure from happening, but it would have been nice to not have been so blindsided by it.  As for The Husband, he's still learning, but he's doing great.  When he became a permanent part of our lives, Liz had been healthy for awhile, and aside from an event five years ago and few break through seizures here and there, he hadn't seen what her seizures really look like.  It was baptism by fire. 

It was five weeks yesterday.  Here's to five more.