Advocating for My Daughter

The most valuable lesson I have been able to apply in advocating for my daughter, Anna, is to be nicely assertive. Respect for others, coupled with confidence, go a long way when trying to influence or negotiate.
One time that I was really tested in this skill was when I took Anna for a three day overnight video EEG to gain insight into her seizures. As Anna and I were shown to her room, I quickly realized that there were many things I knew about her needs that the hospital staff would not know. I had to vocalize what those needs were, especially because Anna is nonverbal.
First, as I looked at this tiny room, I knew that Anna, who is also diagnosed with autism, would go crazy not being able to move around more. She loved to run in straight lines and the bed was going right across the middle of the room. I inquired, “Do you know if this bed can move?” Nurse: “Yes, they have wheels, so we can move them if we need to.” Me: “Okay, can we move this bed parallel to the wall, so that she can walk more easily in the room?” Nurse: “Oh, I don’t know. We’ve never done that before. Let me go check if I can get someone to help us move it.” Me: “Oh, that’s okay. I can move it.” I started to move the bed, once I knew that they were okay with it being moved. Nurse: “Oh, you don’t have to do it alone. Let us help you.” With the bed moved, Anna was noticeably happier as she started walking in the room.
Next, the EEG technician let me know that Anna would need to sit or lay within a three foot area on her bed for the duration of the three days so that the video monitor would be locked on her image at all times. I wanted to be cooperative and maximize the information from the video EEG while still allowing Anna to move around a little. I also wanted to help the EEG tech to see a valid reason for Anna to move. I said, “okay” and explained that Anna was currently potty training and needed to walk to the bathroom once per hour. He agreed as long as we were trying to keep her on her bed the rest of the time. Later, another EEG tech showed me how to strap the EEG case over Anna’s shoulder if she needed to go for a walk.
Finally, by the end of the third day, Anna was done. She was extremely restless and she needed to get out of the room. Where most of her seizures were at night, I knew that we had captured what we needed from the EEG. I strapped her case over her shoulder and talked with a new nurse, letting her know that we were going for a walk since one of the techs said that we could. She replied with a stern face and her head bobbing back and forth, “Oh, no you’re not!” I was quite taken back and I knew that I needed to remain calm while moving forward with taking care of my daughter. So, with a smile on my face, I calmly said, “Yes, we’re going for a walk now. She is done being in the room and it will be a short walk.”
The nurse became irate. She insisted that we would not be going anywhere and said that if Anna were to have a seizure and get hurt, they would be liable. I responded, still in the same calm tone, that I would be happy to sign a release of liability, but that Anna needed to go for a walk. The nurse’s face turned bright red as she insisted her point again, arguing that she would get in trouble from the doctor if she did not keep us in the room. This was when she seemed to realize that I was completely calm and collected while she was losing self-control over her emotions. I responded that I would be happy to wait for a moment while she made a call to the doctor. If the doctor insisted I stay, then I would. All of a sudden, the nurse seemed to calm down, and, although she did not agree with my actions, granted that we go for a short walk.
About fifteen minutes later, Anna was refreshed from her walk and could endure the remaining hours until discharge. I was very happy that I was able to advocate what I knew she needed and that, interestingly, upon our return, Anna’s nurse was very respectful and personable.


Author: Jeanette Pascoe - 9/2014