My everyday life is consistent, predictable, and in ‘ABA terms’, errorless. It is a series of first-then statements where I find pleasure knowing what comes next. My daily schedule from Monday to Friday runs something like this:
- 4:30am - ‘Me time’ where I clock in my miles, yoga, and/or weight training.
- 6:20am - Peter and the kids wake up.
- 6:50am - Breakfast time.
- 7:20am - Out the door to drop Bella off at her IBI clinic.
- 8:00am - Arrive at work, and change hats into teacher-mode.
- 3:30pm - Pick up the kids at their respective schools.
- 5:00pm - Dinner time.
- 5:45pm - Bedtime routine.
- 6:00pm - Bella goes to bed, Peter gets back from work, and Petie gets ‘mommy and daddy time’.
- 7:00pm - Petie heads to bed, and I head to conquer the kitchen and lunches.
- 9:30pm - Goodnight!
Our weekends vary as we fit in regular household routines such as groceries, household chores, and kids’ extra-curricular programs, however it doesn’t veer much from the weekday schedule above.
Since Bella was a toddler, she has always responded very well to routine and structure as it has taught her many life skills such as: requesting to go the bathroom, sitting down before putting on her shoes, and using her iPad to communicate her basic needs. However over many years of making consistency a priority for a child with special needs, I am beginning to realize that it has also created a “beast” in me. It is extremely hard for me to let go of routine. To sum it up, this is me when it comes to anything veering away from my daily schedule.
A few months ago, our friends Alvin and Fiona were trying to get our family to go with them on a trip. My husband Peter was definitely interested, however all I could think about was what could go wrong: What if Bella can’t sit in her car seat? What if there is a long line up at the restaurant? What if the food takes long to come out? What if we get denied out of a place with Bella’s service dog, Kadence? What if all the public bathrooms have loud hand dryers? And my biggest fear with travelling overnight is Bella's sleep routine.
At home, this is Bella’s ‘fortress of solitude’. We had this bed custom built for her to ensure that that she is physically safe in the night time.
It was only 3 years ago that we started to travel. Now when I say 'travel', I use this term loosely as Florida is the only place we go to visit my in-laws, Peter and Shirley. In their house, Peter and Shirley graciously give Bella her own room with black-out blinds, and have built large wooden frames around a bed to ensure a smooth transition for sleeping in a new environment. Put it this way, without knowing that there was a safe place for Bella to sleep, there would be no option for us to travel as a family.
The initial conversation with Alvin and Fiona about travelling prompted a more serious conversation for Peter and myself. My patient husband bends over backwards to ensure that our kids (and me) are happy, however he mentioned that we also need to “live a little”. In my head I thought "living" were my Friday evening cheat-meals where I ate unlimited chips, cured meat and wine... but I guess he really wanted to push me out of my confined box.
This past weekend we went on a family trip with Alvin, Fiona and their kids Charlotte and Rhys. We decided to go to Niagara Falls for two days and one night, as it was far enough to stay in a hotel and close enough to come home if something were to happen. Can you caption my smile? Ha, ha!
In all seriousness, I am always worrying about Bella every second. I try not to. I really try to release it, but in the back of my head I’m always thinking about the endless ‘what-if’ scenarios. As much as I crave consistency with daily expectations for my children and myself, this past weekend I learned to give up a bit of control to Peter. He planned this trip and reassured me that this trip was not for Bella or me, but it was for our family. He ensured that he would be in charge of Bella in the evening, so that if she was having a bad night of sleep it would be in his hands.
It was time for me to move away from my schedule board.
What if I didn’t know what was next? What if I just went with the flow of the day, and learn to improvise and adapt? Check out some highlights from Niagara Falls:
Everyone was afraid of sitting beside the zombie until Bella and Kadence sat down first.
I still can't believe we can actually sit and eat in a restaurant.
Soaking up the sun.
Petie eating gum for the first time (or so I think it is).
And the biggest highlight of the trip for me was waking up to Peter and Bella sound asleep...
Accepting change has never been my strong suit. I am strong-headed, and always assume that I am the only one who knows the best way to care for Bella and what works well for her. I am grateful for our friends Alvin and Fiona, and my husband Peter as this weekend taught me that it is also good for Bella to have others in her life to push her towards independence and provide new experiences. Sometimes not being able to predict what will happen next on a schedule board can help make life more fulfilling!
To end this post, I'd like to share this video as it is proof that I was able to let go. Bella stayed up (without a nap) until 10pm for fireworks!