Growing up with a sibling who has a disability can be hard and complicated. I can only imagine the challenges of being a sibling to someone with a disability, but for many children and youth in Petie’s position this is their norm. As a parent, whether I like it or not, I naturally put the majority of my focus and attention on Bella as her disabilities require ongoing day to day support. In 2016 I wrote a Letter to Petie, recognizing my son’s role as a young carer for Bella. In our family’s reality, many expectations are placed on him to help care for Bella. From helping to push her wheelchair or adapted bike, participating in therapy sessions, or attending to Bella’s personal care needs by feeding or helping her get dressed. I’m sure most typically developing children love their siblings with disabilities beyond measure and are close to them. But I’m learning that in order to better understand and support them, it’s important to acknowledge their struggles as I see in many ways Petie is Hidden In Her Shadow.
Being home over the last few months because of the pandemic has brought Petie and Bella a lot closer together. I’m starting to see that the impact of having a sibling with a disability shifts and changes over time. For many years I’ve assumed that Petie would always be the one who would support and hold Bella’s hand. However, I’m also starting to see that Petie relies a lot on Bella for his own social and emotional learning.
So where shall I start? Petie has been begging me to allow him to have a sleepover with Bella, and in response I'd reply with a definite ‘No! *FFS*'. In my head I'm thinking, “Consistent routines and clear expectations have predictable outcomes.” (If I could make that into a bumper sticker on my car I would). After persistent begging and whining on Petie’s part, it finally dawned on me. Maybe he was the voice of reason and a bridge of communication.
I was sure that the change of routine would be an unwelcome challenge as it would also impact my loss of sleep. Admit it, having a good night of sleep is a luxury for all of us. So here is the recap for y'all...
Camp COVID Sleepover Update: 9pm, yea this is cute. Petie is holding her hand, maybe this isn't so bad after all.
Camp COVID Sleepover Update: 9:45pm, Bella doesn't find it cute. She does enjoy giving him a good beating.
Camp COVID Sleepover Update: 10pm, now the party begins #jesustakethewheel
Camp COVID Sleepover Update: 11:34pm, Amen.
Camp COVID Sleepover Update: 4am, and Petie is MIA...
Camp COVID Sleepover Update: 9am, apparently Petie left because he kept getting kicked but decided to make a morning appearance.
So here’s the lesson learned from a big sister… turn volume up!
Change can cause resistance and the Camp COVID Sleepovers have helped Petie and myself become more comfortable with going off a routine. I admit that the structures I have created in my daily life have dulled my sense of spontaneity and creativity, but I’m learning that there are times when rules are made to be broken. The beauty of change is a growth opportunity, heck… just let go!