Angels in Action – Rylee’s Story
Celebrating the Abilities of our Angels
By Keisha Tipton, Mom to Rylee, age 9
As a parent who has been injected into disability culture through a loved one, I feel we also have a separate and unique Angelman Syndrome culture. Our Angelman family is accepting, supportive, and non-judgmental; a culture that we are all proud of sharing with one another. Yes, we have trials and tribulations to overcome, but we are far from alone in this journey. We build each other up with words of encouragement and support. Each family goes through our own experiences.
I’d like to take a moment to share with you our story. A story that is essentially just beginning because I see an optimistic future for Rylee; where, before, it hasn’t always looked so bright.
We all know those grim feelings upon that dreaded diagnosis and the instant worries and fears we faced for our children. These feelings fuel my fire for creating every opportunity for Rylee to succeed in life despite the challenges she faces. I refuse to wallow in the sadness and grief. How can I when Rylee is the most forgiving, loving, and cheerful little girl? We have a life to live and I want her to experience it all to the greatest extent possible. Communication is a hurdle all of our children face and without it, our lives are extremely limited. All of our kids have incredible and intelligent thoughts that are trapped inside.
“I want the world to hear Rylee’s thoughts and I know she wants to share them with the world.”
We are just breaking the tip of the iceberg with regard to communication, but just this is more than I could have ever imagined in those early days of her diagnosis. One of the most important things I did as Rylee’s mother was erasing the damage that “disability” label caused. Who was anyone to say what my child was capable of? So many people have thought I was crazy for dreaming so big, but I had to ignore and persevere.
When Rylee was seven, I decided to homeschool her because of my goals and aspirations for her life that weren’t being met in her previous school setting. I wanted an AAC system that allowed her to share her true thoughts and did not force her to communicate what the adults in her life wanted her to communicate. In my opinion it is not true communication when communication is forced in an unnatural environment.
I wanted Rylee to learn to read and write as that would broaden her world even more in the realm of communication and knowledge. At the time, I was not certain exactly how to go about it, but I had to try and going about it alone was my only option.
I spent the first year primarily focusing on her first full language AAC system known as PODD with the help of others in our community. In other aspects to her education I was still stuck in that common special education mentality which required Rylee to prove she was learning instead of presuming it up front. I needed to see those check marks that I was taught were so important. I explicitly taught her lowercase letter sounds through a modified version of Discrete Trial Training. While she was good at it, this approach was not empowering her as a learner. It was forcing her to prove her competence and constantly perform what I wanted her to perform.
I have since been introduced to a whole new perspective that aligns perfectly with my teaching philosophy.
I want to empower Rylee to be a thinker, a doer, and an active participant in her own life and education. Since homeschooling her and pulling her out of public schools, I have watched the most beautiful transformation in Rylee going from this passive, compliant, extrinsically motivated product of special education to someone whom is actively seeking new information and being intrinsically motivated to learn. I feel like she is seeing herself as a learner for the first time in her life because I shifted my focus on the messages I was sending to her.
I scrapped all behavioral approaches and replaced them with appropriate tools to bridge the gap from what her biology limits her from doing and what she needs to be doing. I removed all demands on her performance and began providing authentic experiences for her tolearn and explore with these new tools.
I am not writing this to encourage anyone to pull their children out of public schools and start homeschooling. It is my goal in writing this to show that there are other perspectives to teaching our children and empowering them as individuals.
The educators in charge of teaching our children only know what they have been taught through their own education which primarily focuses on those common behavioral approaches (I know because I’m currently obtaining my Masters in Special Education).