Are you a detective?

Epilepsy Awareness Resources-Meghan's Journey

This is a blog of Meghan's journey with Epilepsy and our families struggles and triumph's with it!

TUESDAY, OCTOBER 18, 2011

Are you a detective?

As a mom, we have many skills and we wear many hats.  I don't think of myself as a detective but that is exactly what I have to be these days.  Today is one of those days.  Even when your children can communicate in someway we have to use these very important observations, instinct, gut feeling to figure out what is going on.  Today I have to use all that and more to figure out what is going on with meghan.  She has been suffering from severe fatigue, loss of appetite  and waxes and wanes with her abilities.  That is where I go into looking at all the variables it could be.  Since my daughter has a severe seizure disorder that is always there in the mix, what supplements or medication changes have I done, what has she eaten or could she be getting sick? This is to name just a few. But I also have to look at her developmental stage as well.  Most adolescents are changing significantly and this takes a toll on them.  It's unusual for my daughter to sleep so much or not to eat so my detective hat goes on!   So I pull out all the stops and look at if she is ill first and then go down the line.  I need to confer with many doctors, her teacher and watch  her carefully to get a clue anything to go on.
Have you ever felt like this?  How do you figure out what is going on when your child is not feeling well? Communication can come in many different forms.  I don't have verbal communication with her but even when we did it was not reliable when she was not feeling well.  We now use pictures and choices for her to give us a clue what is going on with her.  We ask her in a different way to make sure we get the same answer.  I also use my gut instinct to determine if she is getting sick.  I think my observation skills are probably one of  the most important ones though.  I have the opinion that she will show me what she can and is able to do. If I see that she is in bed then she needs to sleep.  We also use something called pecs(picture exchange communication system) it has a picture and word that usually you get introduced by your speech pathologist as an alternative communication strategy.  It's a small green book that we have several pages that include: activities, food, emotion, art and community.  It is a great way to narrow down what she needs and is feeling.
Another way to figure out is by documenting.  I use calendars, websites to make graphs and charts to document behavior, food, supplements and if she is going to bathroom.  This is a great way to see the big picture when I'm getting bogged down by all the little details. I sometimes even go back for months and try to put it all together.  Hoping that something will make sense and jump out at me.
Lastly I  pray about what is happening that I will get a sign or a feeling on what I should do next.  It all seems to come to a head at some point but usually waiting is better than reacting.  That has been a hard lesson to learn.  Years ago, when meghan was very sick and seizing so much I don't want to recall, we would react with medicine right away. Some of the time it was the right thing to do but other times, it was not!  It was like we had to do something for us to feel better.   I remember regretting so many treatments because it was so emotional.  I've learned over the years to slow down, watch and wait!  In that order!  I think you could probably apply this to many circumstances in life!
So here's to being a  detective for today and hoping I will get an answer sooner rather than later.