Max has Static Encephalopathy. Permanent or "unchanging" brain damage. Static Encephalopathy may involve the frontal lobe, which affects judgment and impulse control, and the corpus callosum, the membrane between the left brain and right brain which affects the ability to process information.
Raising a child (or two) with brain damage is a daily, hourly, sometimes minute by minute challenge.
One of the difficulties we face with the boys is when they "transition" from one thing to the next. It is extremely difficult for them to move from one task to the next or from one activity to the next. For this reason we set up a lot of rigid routines which we follow so that they know what to expect and when to expect it.
This fall Max will be taking the school bus for the first time. He has been in an early intervention program for the past two years and I have driven him each day to school in the morning. I am realizing more and more how much I like routines (shocker!) and I am DREADING this transition from driving each day with him. It has been our time together, our habit, and now I will be driving alone and he will be taking the bus. The bus will be new for him and will be hard for him to get used to, but the thought of driving without him brought me to tears yesterday. I will miss mornings with him immensely. I am so very, very sad at the thought of "losing" just this little part of him.