When you have a child with special needs, whether it be medical or developmental, you are very familiar with signing those lengthy privacy practice information sheets. At some point we don’t even bother reading them because we know that once you have a child with special needs, nothing is ever private. Every professional has an opinion. Still, the ultimate decision is up to you.
I was always very conscious of being polite to every doctor that my daughter has ever seen. From very long hospital stays with rotating residents and attendings to a gastroenterologist, pulmonologist, cardiologist, endocrinologist, neurologist, ENT, radiologist, psychologist and on and on, I had to listen to the recommendations from all of these doctors regarding the care of my daughter. This can be very overwhelming for anyone.
I can recall one time about six months ago, when Eliana was admitted to the hospital because she needed IV fluids. At that point she did not have a central IV line since she was much younger. Putting an IV in her was very traumatic and very rarely successful.
In walks an overconfident resident who thinks that she can get an IV in Eliana’s small veins on the first try. I knew that medically she really needed to have this done and it broke my heart to have to hold her down. After Eliana spent about ten minutes screaming and thrashing around, the resident said to her, “Eliana, if you don’t cooperate with me, you might have to stay here for a month!” Had my ears deceived me? Did I really just hear this doctor threaten my daughter, who spent over a year in the hospital at one point? I felt the steam slowly rising to my ears. It was at that exact instant that I realized that I had the power to stop this doctor in her tracks.
I calmly said, “That’s it. You are done. Please don’t ever come back into this room.” I proceeded to speak to her superiors and told them that if this is how she is going to be with children who are sick, then she is in the wrong profession.
For weeks I had visions of seeing this doctor roaming the halls where I would have the opportunity to give her a real piece of my mind. I began to recall all the times a doctor had made a decision or comment that I didn’t agree with. How many times had I let Eliana suffer needlessly because of my inadequacy in dealing with doctors?
I resolved to myself that what was done was done. But what had I learned? I learned that I am my child’s best advocate. This applies to everything from doctor visits to school conferences. I knew that I had grown when a teacher told me that she was trying to “toughen Eliana up” because she would cry when she got bumped. I replied, “I know you mean well, but Eliana needs no more toughening up. Eliana has gone through more painful medical procedures than 20 people do in a lifetime. She needs you to listen to her when she says something hurts.”
All of my children receive the same type of advocacy, whether they have extra needs or not, and I still make mistakes. Parenting is a learning process.
Here are some tips on effective ways to advocate for your child:
Be proactive and educate yourself on what his/her needs are.
Always come to appointments prepared with questions.
Know that you can question anything a professional recommends for your child.
Keep adequate records of medications, appointments and phone calls.
If your child has a diagnosis of some sort, it is not helpful to keep it secret from your child’s teachers because they spend many hours a day with your child.
If your child is on a medication that may affect behavior in school, it can only benefit your child if the teacher knows. This way, if your child begins behaving differently, the teacher can keep track and be her advocate, too.
Learn from mistakes.
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