Tuesday, July 21, 2009

caught in PJs

See...




this is exactly what happens when you OVER SCHEDULE yourself!




You have mushy brain from all that baseball and sun. And in your mush-i-ness you forget to check your planner. Which if you had...would have reminded you that your new Speech Therapist was coming for her first visit early Monday morning. Like still in PJs early!




Nice first impression, right! Least I was wearing my cute jamies today.




::smile::




As for my impression of our new Ms. Speech...




LOVED her!




So many times...sharing Trevor's diagnosis and how it is/has affected him...feels like climbing Kilimanjaro. I get winded from all the repeating of medical history. And heart sick...because the body language I'm reading reveals that it's just not sinking in. And I give up cause I feel like the goal is unattainable. It takes special eyes to see past the cute.




I hate that brick wall feeling.




Today was different though. She asked tons of questions. Including his specific diagnosis...which was written down if I'm not mistaken for personal research material. I was very impressed. And that's no easy task these days. I do think I've become more savvy at how to deliver the information I feel is pertinent. For instance...I no longer say he has clusters of seizures all day long. Instead...I now say that his little brain is in a constant electrical storm. And that if we were to hook up an EEG right now...it would reveal the chaos inside. And how this chaos is SO constant that his little brain does not stand a chance to learn. Develop. Thrive. And that he's remained cognitively where he was when his IS relapsed. We've been circling 15 months cognition for a year now. It's so important for me that his educators...his team...understand that IS is not confined to the 10 minute cluster they saw during his 60 minutes of therapy. The Seizure Monster is attacking him all day long. We just don't always get to see the battle inside his head.



Doesn't help when Trevy doesn't play the Seizure Boy part! Makes me sound like a crazy loon when he's spot on like that! Little show off!




I'm telling you...coming off Banzel has been SO nice! Seeing old skills re-emerge. And new ones blossom...




Like saying what we were all convinced was...




"See"




He would randomly point...and say it. That was unexpected. And a 100% newbie sound!




Plus he signed a variation of "open" several times. And was just a big flirt in general. With those big soulful eyes of his. The girls just melt.




The only thing that makes them melt more then his batting eyelashes...would be witnessing his clusters first hand. I think it's impossible to sit with a child and watch them live through a cluster of seizures without the intensity of it squeezing your heart. And morbidly...I always have a little tickle in my own hoping that his teachers get to see "it". The monster. I suppose it's partly because sometimes I feel SO alone in this battle. And partly because I need for them to see what he has to live...to learn...to fight...through. On a daily basis. And partly to prove that I am NOT a crazy loon after all!




Today...of course the Monster waited until after they pulled away to show up.




Murphy's Law...right.

3 comments:

blogzilly said...

The Seizure Monster is attacking him all day long. We just don't always get to see the battle inside his head.

You have an uncanny ability to say exactly what I want to say but can't figure out how to say.

therextras said...

You have cute jammies?

Colby said...

This therapist sounds fantastic...Over 24 years, we have been through so many...most employed by the school system....Some OK, some great, a few outstanding....And you will become so attached to some of them...I am thankful that you feel good about this one....The interest she is showing in the seizures themselves is vital and necessary...She is taking the TOTAL Trevor into account...NOT just her area of expertise....and she NEEDS to SEE IT ALL!!! Even you in your jammies!!!

Cyndi