Co-Piloting My Daughter’s Red-Carpet Life
I am the mother of three unique and amazing women. They have challenged me as a mother in completely different ways. My youngest is extremely intelligent, but has health issues that limit her opportunities to use this brilliance. I struggle with knowing how to encourage her and still respect her health limitations. My middle daughter is a go-getter and makes things happen. Trying to keep up with her keeps me busy and often exhausted. My oldest is adventurous and strong willed - and just so happens to have a disability. My biggest challenge in being her mom is knowing how to help her live a good life. My dream for all of them is to see them living a life that makes them happy.
Melanie center stage
Melanie is my oldest. She has Cerebral Palsy, Intellectual Challenges, is visually impaired, and has a processing delay. She also has multiple health issues. Despite this, she still has hopes, dreams, and desires. She still wants opportunities to try new things and go on adventures (Think skydiving)! She knows what she wants in life and what she does not. If she had her complete choice, she would be a rock star performing regularly in front of thousands of people. She would live in a motorhome or stay in motels and be in a different place every day. She would have a personal stylist to help her pick out her shiny clothes and someone to do her hair, make-up, and nails. Her nephew would be part of her crew. They would eat ice cream, go swimming, and look for opportunities to ride things together. They would stay up late and sleep in. Sounds like a great life to me. I would be her biggest fan.
So, let’s jump back to my biggest challenge as her mom. She is going to need some assistance in pursuing these dreams. How can someone with severe limitations plan their own life? How can I help her? Quite simple – I am her co-pilot. I let her drive and plan her life and I co-pilot and assist.
Melanie and her nephew
First as Mel’s co-pilot, I need to help her determine how she wants to live her best life. I watch what makes her smile or laugh and what makes her cringe or step back. I document with pictures and videos the experiences that bring her joy. I take note of the negative experiences. We talk about these pictures/videos and pick out the ones that make Mel the happiest. We use these pictures as her voice. Remember, communication doesn’t always have to be verbal.
Second, I observe and document how many times she asks to go to a certain place or how many times she doesn’t want to go somewhere. What activity does she ask to do the most? Who does she talk about the most? We talk about all these answers. We then have ideas to share with the other team members during Mel’s Person-Centered Planning Meetings. During meetings, Mel shares her thoughts on the pictures or scenarios. The team can then see the joy and happiness each picture brings. As a team, we talk about all of this and ask Mel questions that help her express her desires. We discuss the experiences that she didn’t enjoy and try to figure out how to remove as many of them as possible. We listen to her both verbally and non-verbally. As co-pilot, I make sure we all agree that Mel is in charge.
Melanie on a road trip
At first Mel’s “Red Carpet” Life seems unattainable. But with the support of her team, she has built a life that is as close to her dream as possible.
She might not be walking the Red Carpet in Hollywood, but she sure is rocking the Red-Carpet Life in Maryland. Let’s break it down and see how close she is to this perfect lifestyle.
Rock star - She puts on music concerts (complete with microphone) in our garage with the music blaring.
Performing - Mel is an Expectations Matter Co-Trainer.
Motorhome/motels - She takes as many road trips as we can schedule and goes camping as often as possible.
Traveling - She delivers groceries and therefore gets to spend time riding in a vehicle.
Time with nephew - She visits with her nephew at least once weekly. They go for ice cream and enjoy various activities. (They are known to participate in all kinds of shenanigans together. They just went on an Ice Cream Train Ride. I have concerns that he will be the one to take her skydiving in the future.)
Swimming- Mel goes to the pool three times a week for an aquatic conditioning class.
Stylist - Mel gets her hair and nails done and picks out her sparkly clothes/shoes.
Sleep - Mel also gets to sleep in and start her day later than most people.
While helping Mel live her best life might have been one of the most challenging aspects of being her mother, I think it has also been the most rewarding. I'm so glad I get to sit beside her as she navigates life. She is a rock star in my opinion and I am still her biggest fan. I just hope she doesn’t expect me to watch her skydive one day.
If you would like to know more ways to plan your own “good life” or want more information on how to support someone else, please attend one of the Expectations Matter: My Life, My Plan, My Choice presentations. You might just learn some ways to pilot your own life.
