22 Oct Some Days, You Wear the Hat
By Denise Caudill-Irons, NHI Parent and Board Member
Being an effective advocate for my daughter is a skill that I have developed over years, and it continues to evolve as her needs change. I was conditioned to be a people pleaser, not to make waves and to defer to the experts. In the beginning, I blindly accepted the opinions of doctors, therapists and teachers. I willingly agreed with their treatments and plans. I trusted that they knew what was best for my daughter, and I was inexperienced and lacked confidence in my knowledge of her needs. Luckily, amazing people surrounded me. They educated me, held my hand, and walked me through this challenging learning process.
As the years progressed, I gained a better understanding of the world of special needs; and more importantly, I began to know and understand my daughter. I started to see the environment through her eyes and determine what tools she needed to navigate it successfully. My daughter was not going to fit into the typical world, so I had to adjust the world to her.
Advocating is not for the weak. To this day, I struggle to step out of my comfort zone and speak up when something is not working for my daughter. For the most part, people are receptive, but there have been a few instances that didn’t go as well as I had hoped.
When this happens, I try to be calm and rational; but there have been plenty of episodes where I wasn’t successful. In other words, I wanted to verbally torment the offending person until he/she felt as bad as I did. Luckily, that scenario stayed in my head. What did happen was that I would speak in a short, hateful tone or I would cry out of anger. My worst moment was during a well-attended meeting. I called a person out for lying and I shamed her. After that episode, I realized that I didn’t want to represent my daughter that way ever again. Now, when the frustration sets in and I can no longer be objective, I request assistance. When I reach this point, I find it hard not to take things personally. I have to step back and let others help me convey my position. I know that I cannot be an effective advocate for my daughter if I am on the attack; but sometimes it’s hard not to be a mama bear. The good news is that nothing lasts forever. I have weathered a serious season or two, but new beginnings were unknowingly right around the corner. Sometimes things never were resolved, and we changed therapists or she moved on to the next grade. In the end, it always worked out the way it was meant to be; and I gained invaluable knowledge and experience.
Overall, I have found that taking preventive measures are the best way for me to advocate for my daughter. When working with new teachers and therapists, I establish communication early on; and I consistently and routinely touch base with them. I keep meticulous records, and I use the data to justify my requests. I also acknowledge other people’s insights and always show my appreciation. Being respectful makes advocating a positive verb, not a negative one.
After all of these years, things usually run smoothly. However, if I anticipate a tough conversation or meeting, I do have something that boosts my spirits and reminds me that I am doing what I need to do for my daughter. It was inspired by the following quote: “Some days you just have to put on the hat to remind them who they are dealing with.” I wear a witch’s hat charm on a necklace that a dear friend gave me. It keeps me from taking things too seriously, and it helps my confidence.