Advocacy Her Way

Learning has always been something I enjoyed. I was the kid that could not wait to go to school. I loved the discovery and excitement in each new day. I continue to study, learn, grow, and be curious.

Throughout my educational journey, I have had some pretty wonderful (and not-so-wonderful) teachers, but my greatest teacher has been Emily. Her developmental and physical disabilities threw me into uncharted waters. I’ve had to figure out how to meet her needs to the best of my ability. Her limited communication skills add additional challenges. I have watched, analyzed, and studied her for twenty-two years. Her gestures, mannerisms, sounds, and movements. I look for clues, messages, and meaning in every move or action.

I wonder what is going on in her mind. I ponder what she would say if she could use words or signs. I watch how she communicates through noises that seem to all sound the same, but if you are paying attention, she is telling you something. My keen observation has made me an expert in Emily, or so I thought. Once I have a good grasp of her skill levels, language, or limitations, the manual changes.

If you follow me on Instagram, you may have seen the reel of her drinking out of her new cups. (Totally worth the watch because I was super proud of her learning new things at 22.) Well, she really doesn’t like the new cups, and she resists drinking from them. The problem is the Rubbermaid juice box cups have become increasingly difficult to acquire. She also passes throws her cups across the room as if she is Aaron Rodgers throwing a “Hail Mary” pass for a big win. Needless to say, she is tough on her cups.

This past weekend, Emily was home for an extended period. Her adult day program was closed Friday and Monday for the holiday weekend, and Emily decided it was a perfect time to school me. She decided to advocate for herself. I was working in the kitchen, and Emily crawled in there. She went straight for the heavy, tall spice drawer where I keep her supplies, and she opened it! She grabbed the handle, pulled it, retrieved a hidden Rubbermaid juice box cup, and handed it to me! I was blown away.

Last week I listened to Episode 123 of Brave Together. What struck me was hearing Angie Robinson’s son, Giancarlo, share that his mom has taught him to advocate for himself. I cried the ugly cry. I was overcome with grief that my daughter can’t advocate for herself. She depends on others to advocate for her, I thought.

It is funny how hearing a beautiful story of another unique journey can stir up grief in your own journey. It is all about perspective. Emily cannot stand up for herself with words and actions the same way Giancarlo can. I am reminded that comparison is the thief of joy. While Emily cannot speak up for herself and express her needs and desires in the same way as others, she does find ways to stand up for herself in her own way. It’s NOT consistent or perfect, AND that is okay. I was blessed this weekend when Emily advocated to get her old cup back, darn it!

After the shock wore off, I quickly rewarded her by filling her favorite old cup with water and the new “loathed” cup with apple juice. While I love her tenacity, determination, and self-advocacy, I must also prepare her for the future and help her adapt to change.

Thank you Emily. You continue to teach me. While your communication skills are not the same as others, you can advocate for yourself in your own way. You continue to advocate for yourself in your way, and I will fill in the gaps.