Advocacy- how it worked in our tube situation

Advocacy- a fancy world, but something that I feel like is my day to day life at this point. Sometimes it goes well, other times it does not go how I would like but in relation to the girls tube brands it has worked so I wanted to detail the steps that I took to help the girls get the tube we feel is best for them in case others are advocating for their children right now too.

1. First when they first brought Lydia to me with the other tube brand I asked them why and asked them to explain their thinking to me of why they made that choice. I express to them calmly why I thought this was not the best choice but they told me there was nothing I could do.
2. I researched different brands. This is something I had done before as well. Since my kids are in the tube feeding world I feel like it is my job to know as much as I can about it.
3. I got other professionals involved. We talked to our PT and she agreed with where we were coming from. She then called GI and IR as well to give them her professional opinion. We also talked with our ped who understands the medical level but does not directly manage tubes so she personally didn't know about the brands but I listed my worries to her and she was able to back me from a medical standpoint.
4. I teamed up with someone who could help. In this instance that was our GI doctor. She knows my children well but also gets a say in what happens with feeding tubes. While she is not over IR she is someone that they have to work with because they share the same kiddos. They manage putting the tube in but she manages what goes into the tube. She called IR to contribute to the conversation and voice her medical opinion.
5. I talked to IR myself. It was a calm and collected conversation. I had done my research. I had made my observations. I was confidant in why I had to say. But I also listened. It was a conversation.

In the end it worked. My children will have the tube that I feel is best for them.

Here are some things that I find effective in advocacy-

1. Staying calm. Its ok to be frustrated but we communicate best when we take a deep breath
2. Talking it out with other professionals.
3. Talking to friends with kiddos who do and don't have kids with special needs. This helps me to bounce ideas and work on my effectiveness at explaining the situation.
4. Get people involved who are able to help. In this situation our Gi had more pull then our other professionals.
5. Having information. It was not just a statement of "I like this better" but instead it was a providing of facts and observations that backed my claim.
6. Being respectful. Most people work hard and are trying their best. Presuming positive intentions of everyone involved helps to have a team mindset. While I have the inside knowledge of my kids the medical professionals have a lot of school and perspectives I do not.

Advocacy is not always easy. In fact sometimes it is really frustrating. Its also rarely fast, however working together to do the best for others is worth it.

In this situation I am very grateful that we were all able to come together as a team to do the best thing for the girls and hopefully help other people as well.

Advocacy- a vehicle I use to work to get what my kids need