Frustration

Today has been a disappointing day.  I was hoping that the initial meeting with Waverly's teacher regarding the IEP would have gone better.  It seems that we have a long road ahead of us, in terms of advocating for Wavey.  My concern today was mostly for her safety.  She requires CONSTANT attention and the teacher said that Waverly has run away from the class when they are on the playground, wandered away and ended up in another classroom, and puts everything she can find in her mouth (including small chokeables).  The teacher or her assistant has to be with Wavey at all times.  Based on this information, I am going to begin the fight to get an aide assigned to Waverly.  I will meet with the school officials on Tuesday to do the official IEP review.  I plan to go armed with information on Sanfilippo.  I think they just do not understand the scope of this horrible disease.