A new kind of performance review
Many advocates believe it is offensive to talk about mourning a child’s diagnosis, as all children should be accepted and have gifts to offer the world.
Did I mourn my son’s diagnosis? Sure, I mourned that life would be harder for him. I didn’t mourn who he is. He is an empathetic curious soul who seeks and enjoys the beauty of life in the world — and helps me to see that on a daily basis.
Honestly I don’t remember mourning his diagnosis as much as what else I mourned. I was saddened over tremendous losses. I still mourn. I walked away from a business I loved. I mourned less adulting and the loneliness of supporting what they call the invisible disability. I mourned lack of sleep and loss of energy for personal attention and interests. I still mourn the break in career after having one for so long.
I needed to be fully present for my child and the challenges we would take on together. It was my new job. So many things for me to learn. So many things to take on. Just like with any new role, it is important to find new ways to define success. New ways to to find joy. It has taken me so long to unlock this part of the puzzle — I hope this helps you find it faster after reading.
My challenges are different now and ongoing all the time — and matter so very much. How to support our child to be successful in school and socially, and support evolving interests? How to get a cocktail of meds and supplements balanced to provide optimal support? How to keep our household sleeping (and how to manage on less sleep)? How to get an effective IEP? How to best support his school and teachers so that they can support him and ensure they deliver on IEP? Etc etc etc!!
This means my personal wins and successes are different too - but they are there just the same. It took WEEKS of trial and error and patience to remove a major medication from his regime per his doctor, and find a way to replace it via a combination of supplements so that he is still supported in a similar way - including multiple observations on my part in a classroom environment to help prepare for school. I am thrilled that it worked; Finding a way so that he (mostly) sleeps through the night = major household win; Getting him laptop support when writing is hard; Figuring out how to share the world and travel successfully together; Stretching my patience and focus and determination skills; sharing our successes via advocacy and blogging. If I was getting a review by my managers, these would be glowing highlights (just sayin’).
My payment for this job — rewards, job satisfaction and joy — are also all on me to find and hold. This is what is different. I don’t get to rely on regular societal ones - community recognition/accommodation, raises, promotions, positive job reviews, customer satisfaction and reviews. But I am still developing personally. While this is certainly not my career interest of choice, it is a passion. My child…my family…my personal development. I’ve learned to celebrate the achievements. What are yours?