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Advocating for My Daughter
One parent describes a challenging time advocating for her daughter. This
page will describe the challenge and examples of being nice but assertive in
adapting to the situation and advocating for her child.
Being Nice and Assertive
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.
Adapting to the Need to Move Around
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.
Advocating 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.