Saturday, March 29, 2014

Advocating for Our Children

Learning to advocate for Caleb has taken many years and many different trials.

The advocating began with Caleb's doctors. Twice in Caleb's seventeen years we
have had to change doctors in order to better meet his needs.

The first time we were choosing a course of treatment that our local doctor felt
strongly against. In order to proceed with what we thought best for Caleb, we had
to choose a new pulmonologist. We had been working with this doctor for
almost two years, so leaving felt like a betrayal. I was nervous to call him and tell
him we were switching, but I felt it only fair to give him an explanation. He listened
and cautioned again against the course of action we were taking; he then agreed that a
different doctor would need to be put into place as he was not comfortable proceeding
with our choice of treatment. This was the first time we had to make a choice
contrary to that of a trained professional, and it felt like we were taking a big risk.  What if the course of action that we were choosing turned out to be wrong?  What if this doctor was correct?

The second doctor wasn't quite so agreeable when we left. Caleb had developed kidney stones, and we needed to receive treatment from a Urologist.  Caleb has a very high tolerance for pain, so after the doctor had placed stents for Caleb’s kidney stones and instead of improving, he was still doubled over in pain, I knew something needed to be done. After several calls to the doctor over the course of a week with no response, I decided to switch doctors. This was tricky because I didn't know if I would be able
to find another doctor that was willing to take our case in the middle of treatment. Thankfully, we did find another Urologist who was willing to follow Caleb.  I do not normally call and file complaints, but because the first doctor had been so negligent, this time I did. I expected to receive a call back from the doctor's supervisor but was not prepared to hear from the doctor himself. He called and proceeded to yell at me and let me know how upset he was that I had reported him. I was shaking when I got off the phone, angry at the injustice of his attack and at the reality that it had taken a filed complaint to finally receive a personal response from him. But I also knew, at that moment, that I had made the right decision for Caleb, and I was glad I had taken action for him.

We have also frequently had to advocate for Caleb in regard to his nurses. Ninety-
five percent of the nurses that we have had have been amazing - truly God sends. But
just like any other profession, there are those that shouldn't be doing what they are
doing. The easiest nurses to let go were the ones employed through an agency. For
those, I just had to call the agency and tell them not to send the nurse back. Of course,
this often meant that we were without a nurse for a week or more, but sometimes it
needed to be done. The most difficult time to let a nurse go was when she had fallen
asleep on the job. After waking the nurse and often times debating with her that,"Yes,
you truly were sleeping,” we would have to ask her to leave. I would like to say that
we immediately released these nurses, but sometimes we gave them several more
chances. I look back and cringe at the thought that we were putting Caleb's life at risk
because we were unwilling or unable to get up the courage to let the nurse go. Firing
a nurse was so hard because she had usually been with us for several months and we
had developed a relationship with her. Eventually we realized that we had to look out
for Caleb's best interest first, but it was never easy to cut these ties.

All parents must advocate for their children. We all have to deal with teachers,doctors, coaches, etc. Even though advocating for my children often makes me nervous, I have improved at it over the years. Here are a few insights that have made the advocating more effective.
  •  I am the only advocate my child has. He cannot advocate for himself. This knowledge is often enough to give me the courage I need to proceed when I would rather stay quiet.
  • I approach the individual(s) that I need to confront with dignity and respect. Often I end up discovering that we are all trying to do what is best for my child but are going about it in different ways. At times we can come to an agreement, but at other times I will need to proceed with a different plan.
  • I go directly to the person I am having an issue with. Even though it is tempting to share the story with everyone else, until I approach the individual who can bring about change, I am not really advocating for my child, I am only venting.
  • I often have to make decisions based on my gut instinct.  I know my child better than anyone else and therefore must proceed when I believe a change needs to occur.   
 Advocating for our children is rarely easy but always necessary.  As we improve in our ability to advocate, we will be better able to fight for our children when they are not able to fight for themselves..


  1. Denice - thank you for your post and wisdom! Being your child's advocate is challenging, exhausting and sometimes downright scary. Having a child myself with medical issues, and a learning disability at a younger age, I had to take on this role that is not normally my nature. But it is funny how you will fight and give everything you have to be their voice. No matter how old they get (as my daughter is now 24), sometimes, it is still necessary, and to just to be there with them as an extra voice and sometimes listening ears. Hospital stays, doctor visits, contradicting diagnosis, doctors who just don't seem to care, we have been through many. Within just the last few weeks we had to make a decision to leave another doctor as he took a nonchalant approach to her care after she had been in the hospital for 8 days. We put our trust in these highly regarded professions of others, but like you said, sometimes that "gut" feeling seems to just override any educated advice. Thank you for your insights on how to be more effective. It is a great reminder on doing so in a mature, Christian manner. Even while typing this, I received a call from my daughter that got more confusing test results and now we are back to square one. Parenting is hard enough, add this to our list of job descriptions and this one has to be the hardest!! You are such a great encouragement and an inspiration to me and others!! God bless you my friend and your journey ahead!!

    1. Jean, Thank you for sharing a little of your story. I am amazed at how frequently we need to advocate for our children/ adults. Caleb is now 17 and so even he is entering into adulthood. I can only imagine how much it means to your daughter to know that she will always have your help and support. You are correct, it can become very tiring and hard. I am sorry that you are in the midst of struggle with this even now. My prayers are with you and your daughter. Please keep me updated on how things turn out.

  2. Great post. Thank you. I'm going to share with my facebook page "The Caregivers' Living Room" because I think anyone advocating for a vulnerable person (including the elderly) can benefit from your wisdom. I'm the Mum of a very complex child too and I've advocated for him all his life. I've had the shakes after conversations as well. Now I advocate for my son and my mother who is 92. Thank you for a great post!

  3. Donna, I completely agree that people must often advocate just as much for the elderly. God bless you for advocating for both your son and your mother. I can imagine that you have been in many challenging situations as you have fought for services for each. May you remain strong as I know how wearisome it can become. Thank you for sharing the blog and taking the time to leave me a comment. The feedback is always appreciated as it helps me to know what challenges my readers are experiencing.

  4. Thanks for sharing your experiences gained through the years of advocating for your son...confrontation is never easy, but handling it tactfully and with respect is Christ teaches us, it is important to treat others how we would like to be treated. I personally have a hard time going against doctor's opinions, but I want the best care for my son with sensory processing disorder. If we don't speak up for our children, who will?

    1. Chanda, I completely agree. We become the voice of our children. Although for most of us advocating does not come naturally, I believe that learning to do it in a respectful way really helps our child's cause in the long run. May you continue to have wisdom as you make choices for your son.