To self-educate is my privilege
Updated: Jan 28, 2021
I know I haven’t been close to meeting my blog post goals, and I’m OK with that. I’ve been spending my dedicated blogging time to reading everything I can about autism, and I’m in awe of my own ignorance on the subject prior to my head first dive in this summer. When I was working in a traditional 8am-5pm j-o-b, by brain was consumed with just surviving day to day. I’m not ashamed at my ignorance back then, it was understandable. I had lunch with a former colleague recently whose daughter identifies with special ed needs, and she lamented for more than a minute on how much easier it is to work then be in the trenches with said child. Assuring everyone got out the door in the morning- mostly on time, fielding daily school calls and regular teacher meetings, figuring out logistics of changing schools, having dinner the table that the kiddo might pick through for a little daily sustenance, and exhausting pregnancy for kiddo #2, not to mention actually fulfilling work responsibilities… in hindsight, how did I not have a total breakdown? This slower pace is the best thing for my family. Committing to fully engage in ABA has been a miracle for my family. The opportunity to educate myself and reflect what it means to have autism in my family DNA is such a blessing.
And it’s hard, really hard. There are days I just curl up on my couch and numb myself with Netflix. But I’m committed to making everyday a new day, because I want to choose to not be ignorant. I want to understand the arguments around different approaches to autism, the political implications, what research is happening, and what voices are speaking out. Eventually I want to contribute my voice more publicly, but I’m not ready for that yet. For now I’m OK with keeping my blog relatively private, only sharing with people I choose to tell this is want I’m doing. After I left my j-o-b, I met with a wonderful therapist a few times. In sharing my “next step” ideas, she asked if reinventing my career as an autism advocate might be a little to close to home. Frankly, it is. We’ve experienced trauma as a family trying to make it all work, and I failed in the balance. I couldn’t keep my job. And I’m OK admitting that. My failure in that balance, and trying to make it work with some really difficult (i.e. ignorant and burned out) people, actually had the best outcome for my family. Because we have ABA for Bryson, and because I could advocate for him to be in the right school program, he is better able to self-regulate and is growing in his ability to communicate and show independence. I believe as he gets older, and I’m a little more removed from the most traumatic of these times, I look forward to contributing my voice more loudly to the autism advocacy movement.
Until that time, I’m grateful for the opportunity to educate myself more wholly. I’m able to check my privileges, reflect on my decisions to date in how I’ve chosen to support my son, or what I’ve done that hasn’t worked, and consider what other treatment strategies there could be for my son or other families I might be able to support. There’s so much to know, and frankly so many voices out there, it’s a lot of information to take in. But it’s worth my time now, and not just that I need to but that it’s my privilege to do so.