April 2nd was “World Autism Awareness Day” and the entire month has been designated as autism awareness month. I completely missed it and posted about it a few days later because this is the first time it’s mattered to me. Then simultaneously without knowing, Lisa and I both began writing blogs about it and when we compared notes they were almost identical. For this post, I’ve chosen to feature her writing instead of mine here on my page:
Prior to having two of our beautiful children diagnosed with any sort of illness, disability, or disorders, it was pretty easy for us to disengage or selectively ignore or engage with certain initiatives and causes that came across our paths.
Now that we're parents to two children with specific diagnoses it's become apparent that fundraisers, awareness days, events, etc are going to be part of our every day life.
All this to say though, we're very much on the fence about where we stand when it comes to fundraisers and initiatives.
Back a few months ago when we were still in "research mode" and hadn't receive Madison's official Rett Syndrome diagnosis yet, we came across another Rett Mom on Instagram and began following her (among others).
Betty, is a no-holds-bar type of person who speaks her mind, has bold opinions, and is a passionate advocate for her daughter Gracie who was diagnosed with Rett 10 years ago.
After reading articles on her site (highly recommended by the way if you want to know more about Rett Syndrome and step into our world), and on her Instagram feed, one post in particular spoke to us about how at one time she was a champion fundraiser--organized countless Rett events, volunteered, was the advocating parent that everyone dreams of and I think aspires to secretly.
But, in the end, after burning out, she stepped away upon realizing that while she was advocating for her daughter, she was taking so much time away from actually caring for her daughter because of the awareness events! She suddenly realized that her efforts were actually causing separation from her daughter, taking all her energy that could've been spent caring for Gracie attending to her very specific and extensive needs, and she promptly quit all efforts surrounding the Rett community.
It made perfect sense to us as well. It seemed very clear, and backwards.
Back even a couple months ago, we discussed the idea of championing our own regional Rett society, or devoting hours to the Rett Society of BC and working hard to bring awareness, and raise funds for research and advocacy for Rett families.
Given that we barely survive on a day-to-day basis, and after reading Betty's post, we recognized how bizarre and ludicrous it was for us to pursue the things we were pondering.
Now, we're not saying that we won't ever be involved in events over the coming years, but what our fellow Rett mom shared is correct and really resonated with us: Why are the parents tasked with the job of fundraising or spreading awareness or being the sole advocates while at the same time needing to continue to provide extra care for their special needs children?
How is that right that we are expected to divide our time between caring for our very sick and very needy children, and raising funds for organizations to "spread awareness" or "raise money for the cure" when in reality, most families won't see a dime of the money they raise, and we could simply talk to people about our children and the challenges they face daily, and raise awareness that way with the effort we can afford to expend--could we not?
It's not a popular opinion, I know, and we definitely talked extensively before writing this post, but I think it should be noted that we are exhausted. All special needs' parents are exhausted. And not in a normal "I have a kid" type of way--it's much, much, more.
I would much rather use any "extra" energy I may have at the end of the day to try to support other families practically who may need a break. My money and time would be best spent hiring respite for a family who needs a night out, or providing a few meals for a family who had a really tough week with their kids and are struggling to make it to the end of the day, much less meal plan or even take time to eat a nutritious meal.
This is not to gain sympathy, but just to paint a picture of what our life is like and what so many other special needs' families lives are like. I guess the whole point behind this "rant-like" post, is simply to shed light on the fact that "awareness campaigns" and "awareness events" are pretty pointless in our minds.
Do something practical. Do something tangible. If you feel compelled to take up a cause and advocate for something, then do something, don't just hide behind "spreading awareness" but rather look for impactful ways you can actually champion that cause especially on behalf of people who cannot.
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