Weekly Battles - Weekly Rewards

This week’s battles:

• My attorney and I were once again in Federal Court trying to ensure Ashley’s right to due process was ensured in a Medicaid dispute. This stems from a request that is now approaching 18 months old, and one whose cost to fund would be miniscule compared to the 18 month cost of litigation. Yesterday, for example, the Attorney General’s office had 10 people in attendance for the trial.


• A meeting I was required to attend was held at a location other than my office building. I called in advance of the meeting to ask where the handicapped parking facilities were located. I was told there were no handicapped parking facilities.


• Because of a court subpoena I received this week, I needed to reschedule an IEP meeting for one of my children. I was told by the teacher that all IEP meetings were going to be held in 3 days, the schedule for which was determined by school administration. I reminded the teacher that the state regulations require that the parent’s schedule to attend needs to be considered. I was told by the teacher ‘Sorry, that’s all I have to offer’.

This week’s rewards:

• While waiting for the morning school bus, Ashley signed ‘hear bird music’. Ashley is very significantly hearing impaired. I never thought she would be able to hear birds singing.


• I was a guest lecturer at a severe disabilities consortium class on Tuesday night. The class was composed of students from the University of Virginia, Virginia Commonwealth University, Radford University, Norfolk State University, George Mason University, and Roanoke College. The day after the class, I received an email from one of the participants asking what the process was for adopting a child with special needs. The participant is really serious about adoption of such a child.


• Thursday was Ashley’s birthday. She turned 12 years old. Her doctors had originally stated she would not live past her 2nd birthday.


• One of Jessica’s daily living goals was to learn how to leave a message on a telephone answering machine. While I was at my class on Tuesday night, she left the perfect message – “Hi, Mom. This is Jessica. Please call me back when you get a chance. Love you.”

Fortunately, the rewards almost always outweigh the battles.