My involvement with and dedication to World Autism Awareness Day has changed over the years. I have done television and radio interviews and volunteered in several schools spreading awareness and calling for acceptance. I have lead campaigns, organized fundraising events, “lit it up blue” and celebrated my son’s difference. Today, however, I don’t have the heart to celebrate this disorder. Yes, disorder – not superpower. Today, I feel defeated.
Since his diagnosis over 10 years ago, I have been very open about Giancarlo’s struggles. If you follow me on social media, you may have seen posts about his sensory processing disorder, his speech delay, or you may have seen pictures of the bruises I suffered at his hands. I recall one post in particular where I made a connection between his agression towards me with being in a domestic abuse relationship. And in that post, I said that I stayed because my love for him was so great.
That’s the part that stings. Because ultimately, I could no longer stay. Six months ago, Giancarlo was transferred to a group home because it was too dangerous for him to continue living with us. Despite my great love for him. Despite police intervention, special educators, medication, pictograms, routines… despite pouring all of myself into not giving up, I had to throw in the towel.
Yes, I see him on weekends. Yes, he is well taken care of there. Yes, the structure has been beneficial for him. Yes, I was able to go back to work and yes, my nervous system has begun healing – but I don’t know if my heart will ever recover from that shattering decision.
I will never “forgive” autism for taking my son away from me. I’m not supposed to say that, and especially not on World Autism Awareness Day. “Different, not less.” “Not disability – Different Ability.” Fuck that. I’d take away his autism in a heartbeat if I could. I’m not a fucking hero, and I feel like all the times I celebrated autism, that’s how people saw me. But it’s a sham. Autism broke me. Broke my family. I’ve been called a warrior mama – but I’m tired of the war. I’m tired of the fight. My body and my spirit have been so worn down by Giancarlo’s autism. So no, I will not celebrate today. No rainbows or puzzle pieces, just a heavy heart that, a heart that has been broken, shattered, and keeps beating even when it feels impossible, because, that’s what mothers do. Even when Autism wins.
Mommy and the Monsters 