Ryan likes to talk to himself.⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ He sounds like a teacher sometimes, talking to students. Or he is talking about sports like he is a commentator.⠀⠀⠀⠀⠀⠀⠀⠀⠀ When we go on walks, he sometimes walks a few steps behind and has a conversation with himself.⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ And he is soooooo happy.⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ This used to bother me. It was odd behavior. He would do it Continue Reading
ON. ON. ON.
When you have a child with special needs, you are ON at all times.Or, it certainly feels that way. Often. When you have a child with Prader-Willi syndrome (“PWS”), because of the high food drive, called hyperphagia, you have to be structured, consistent and vigilant, about the food schedule, food security, and keeping everything locked. Not leaving any food out. Avoiding Continue Reading
Please Don’t
A two word prayer.⠀⠀⠀⠀⠀⠀⠀⠀⠀A two word wincing and wondering and hoping.⠀⠀⠀⠀⠀⠀⠀⠀⠀A phrase of my anxiety about his anxiety.⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…wake up “off” today.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…get upset.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…be obsessive this morning.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…complain. ⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…fall apart and cry.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…bother the neighbors.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…talk to Continue Reading
My Thoughts on Your First IEP (Individualized Education Plan)
It's astounding to me that we just had Ryan's 10th IEP!! The first one was when he was almost 3 years old, and not even walking yet. He began his education journey at Sunrise Preschool in Palos Verdes, a special education pre-school, full of caring, skilled teachers, therapists and staff. I can still see us sitting in the physical therapy clinic on the floor for his evaluations. "Miss Continue Reading
Dear Whomever Marries Luke and Kate
Dear Whomever Marries Luke and Kate, You have been given a sacred and very prepared spouse. Each of them is overqualified and overjoyed to share life’s adventures with you. Any adventures. They can roll with what life hands you along the way. You see, for decades, they have loved and lived with their disabled brother. They have been Ryan’s cheerleaders and champions. His Continue Reading
Expressing Motherhood Piece
This past weekend I had the privilege to be a part of the Expressing Motherhood--South Bay Showcase. Created by Lindsay Kavet and Jessica Cribbs in 2008, it's a stage show of writers, sharing or performing their pieces on motherhood. Any take is welcome. You will laugh, cry, be inspired, and be validated or encouraged as you listen to diverse stories that resonate somewhere within us all. I Continue Reading