I’m not entirely sure how I found it. Possibly it was through the Autism Speaks website, as that was my first encounter with advocacy as a parent of an autistic child. I’ve only been in the autism “mix” for a couple of years and Autism Speaks has been shifting from a cure focus to an awareness focus (this wasn’t always the case). That’s how I found “A Diary of a Mom” (DOAM). DOAM is a wonderful blog, written by a mom of 2 girls – one autistic and one NT. I read the entire 5 years in two weeks and it was a game changer for me.
Jess and her family’s journey in the world of autism is laid out with frankness, eloqunce and humor. The emotional highs and lows, the small (yet big) triumphs, the every-day stuff – and most importantly for me – experiences from someone who has been around the block. What was unexpected was the discovery of windows through which I can see autism from the inside out. Jess has connected with other parent bloggers who also share their story, BUT she also connected with AUTISTIC bloggers – people of all ages, from all points on the spectrum, who are SHARING THEIR EXPERIENCES! Freaking jackpot of information and support! (YAY Autisticook and Invisible Strings!)
My son has what some might refer to as “a toe in the shallow end of the autism pool”. He doesn’t have the stereotypical behaviors of stimming, repeating, rocking, etc. He doesn’t have sensory sensitivities. He’s a sensory seeker and loves to touch EVERYTHING, he’s a social butterfly and loves people. He’s “quirky”, “different” – his autism shows up in that he doesn’t get the subtle shades of emotion, reaction, facial expression, body language. He has some trouble with emotional regulation – he flips hard into sad and it takes him time to get back to his usual attitude of content/happy.
As his mom, I want to level the playing field for him as much as possible. I remember how it was for me, a “regular” geek, as I went through school. Being just a little bit different is challenging enough, so I have that tiny window into what things might be like for him. But we live in a world where (I assume) most NT perceptions are similar to my own, most NT thought processes follow similar structure. This isn’t the case for DS.
It’s his life, his struggle, his experience, but the more I understand it, the more I can help him understand it as well, and the better he can communicate his perceptions, his experiences to me and to others. Finding these windows into the experiences of others has made that more possible, less difficult, and for that I am very greatful!