Saturday, September 1, 2012

Disciplining with RAS

Is there anything worse than watching your child collapse into a seizure?  What about the pain of knowing, as their eyes roll to the side and they writhe painfully, that the seizure was your fault?

Most parents of children with RAS have probably felt this way more times than they can bear to admit.  I caused L's second seizure by stepping on his finger as he crawled around a GAP changing room floor.  (Needless to say, I left without any skinny jeans that day.)  I've triggered seizures by leaving a room without telling him I'd be right back, changing his clothes, misunderstanding him, startling him with loud noises, holding him in my lap in a taxi when he wanted to explore the dirty ashtray... but those were all accidental and unintentional.

How can you discipline someone this cute?
What about the seizures I've triggered by disciplining him?  We all know consistency is key when it comes to discipline, but I'm sure I'm not the only mom who has worried about causing a seizure as I deliver a harsh warning or a swat to the bottom.   Disciplining our children is already such a personal decision, and parents have to choose the method that feels right to them.  The natural response of wanting to avoid another seizure can tempt us to let things slide.
For me, I finally decided two things.

One: there are two choices when it comes to L.  A few years down the road, he can be a naughty, undisciplined boy who has seizures, or he can be a polite, well-behaved boy who has seizures.  There is no third option where he doesn't have seizures.   Of the two, there is no question what we want for him.

Secondly: when I discipline L and he has a seizure, I didn't cause the seizure.  I haven't ever caused any of his seizures.  He has an awful disease, and that horrible disease causes his seizures.  Though it may just be a matter of semantics, it helps me keep the right perspective.

His seizure are outside of my control.  As his mom, all I can do is prepare him the best I can for a good future, seizures or no seizures.  And training him to be obedient and well-behaved is one of the best things I can do for his future.


  1. Well said! You can only make the decisions that are right for you and your family, and I love to hear how you work with the child you have, rather than regretting who he is not.

    Before I cut the artificials, my daughter had night terrors, and I'd sit there with her (if I touched her she'd flail and lash out physically,) not knowing what to do. Talking to her resulted only in screaming. Trying to comfort physically was worse. But she wanted me to stay. She'd scream worse if I got up or tried to leave. I just had to wait them out. 5 to 10 minutes of torture, feeling beyond helpless, wishing there was SOMETHING I could do for her.

    Nothing like seizures, though, and not ever triggered by my actions, so I can't even imagine what you're going through. *hugs*

    1. That sounds just awful. I've heard they don't remember the night terrors the next morning, but I still can't imagine how awful it would be to see your child being terrorized like that and not have any way to help them.
      I'm so grateful that, because of our diet, Lennon's seizures have become very rare events instead of daily occurrences. When one happens now, it's easier to take it in stride. Thanks again for visiting the site.
      One of these days, I'm going to try some themed lunches like you feature on your site.

  2. Your positive attitude through your struggles is amazing! Great job acknowledging what is within and outside your control...and keep doing the right thing, Mama! Also? Your boys are adorable.

    1. Thanks, Mel! It's easy to get bogged down with things we can't do anything about, but all that does is add more stress and I sure don't need any more of that in my life! :) Thanks again for checking out the blog.