Lack of communication is just frustrating. (Is that an "Amen" I hear from my fellow CHARGE families!?!) It's been (and probably always will be) one of the most difficult parts of my journey with Maxwell.
As much as he can express himself to me (and I am incredibly grateful for his expanding signs), there are countless ways he cannot...at all.
For whatever reason, it really hit me yesterday as I was getting him off the bus. I send him to school and then two hours later, he returns. I have no idea his favorite part of the morning...what kiddos were there today...what was funny...what he learned. Nada, zip, zero. I have a good relationship with his school team and we talk often. But boy would I love to hear directly from Max about his day and I wonder if/when that will ever happen.
Then yesterday afternoon, we were running errands and suddenly he was angry. And he began to yell, scream, and hold his breath. Sure enough he turns his infamous color of pale blue and becomes stiff and non-responsive.
I have learned to not completely freak out about this, but it still isn't easy. And let me tell you the looks we were getting from others. Wow. So of course, we quickly headed home and called it a day. What got him so upset? I have no idea.
Overall I feel quite blessed with the level of communication we have achieved. Truly amazing considering his challenges. (I still practically cry when he signs "chocolate" to me....so stinkin' cute!)
But sometimes I am reminded of just how overwhelmingly far behind we are and how amazing it would be if I could simply ask him "what did you do today?"