It's Difficult to Deal With Breaks In Routine....A Quick Example....

A regular daily routine is one of the most important things for Alicia.  With most children with Rett Syndrome and Autism, a regular routine helps to keep them focused and happy.  A quick example of what happens when things are not the same I experienced yesterday and this morning (not for the first time and definitely not for the last).  The bus driver that picks Alicia up for school told me that she was going to have a bigger bus today.  Well bigger meant a difference in the height of the stairs, the seat her harness was attached to, not the same rails to hold onto when we get on and off the bus and she wasn't sitting in the same seat she usually does.  She has always had difficulties with her fine/gross motor skills and has at times a very unsteady gait.  I watch her walk all the time and think to myself, what are we going to do when she's not able to walk anymore on her own?  Well the answer would be obvious (a wheelchair), but your mind just refuses to go there.
So we had the different, bigger bus pull up yesterday and this morning.  Before the bus even stopped at the end of the driveway, Alicia was already pulling back and shaking.  If she gets very nervous about something she has "postural tremors".  Sometimes these "tremors" look exactly like seizures.  I always keep a close watch on her eye contact to make sure that it is indeed not an actual seizure.  When she did have an EEG years ago, it showed abnormal brain activity but nothing that actually showed she was having an type of "regular" seizure activity.  Honestly, I believe at some point the seizures will start but every day I hope and pray that it won't be that next day.  There are so many questions and concerns that I just won't have an immediate answer to and I just have to wait it out.  My hubby always tells me to not over worry about things and just take it day by day.  I am not very good at doing this at all.   My mind travels to way down the road and what more difficulties we could possibly be facing with Alicia.  I am really the type of person that needs to "stop and smell the roses", not pass them by.