So I’m cheating with this post. I actually shared it to my Facebook feed on this day in 2013, with some editing.
When the boys were babies, I talked to their pediatrician with the MDFAAP behind her name about the crying for 7 hours straight. I talked to her about the words they weren’t saying and the poop they’d smear and eat. I asked about a lack of eye contact. She assured me this was normal. Kid1 and Kid2 are 18 months apart and shared behaviors. Yes, we changed doctors. (Fewer letters behind the name, but much more personalized care.)
Autism was a new word for me. It took a long time to learn the name that covers the habit of running head first into the wall only to slam the back of their heads on the floor. I thought climbing on top of the highest pieces of furniture to jump down had more to do with being boys than a need to control a sensory overload. It took a while for them to break me by dumping all of their toys over their head the minute I picked them all up.
I once had a stranger come from off of the street into our apartment complex to investigate the child abuse sounding cries from Kid1 because I left him inside the house to unload groceries from the car.
I thought this was normal. When I found out it wasn’t, I looked for support groups. Of course, this was after a visit with a different doctor who looked me in the eyes and said, “you poor woman. There are medications for this.” She stood quietly as I sobbed and thanked her. In the long run, the drugs weren’t worth the risk to a 3 year old.
In the early days, with other parents of newly labeled kids, these groups became safe places to complain about the many ways our kids failed our ideals. It was a place of blame and anger. The group meant to strengthen and encourage me left me broken down and unable to face the strangers commenting on my children’s bad behavior and my lack of parenting skills and discipline. Once I told a woman that I was sorry my autistic kids were ruining her perfectly peaceful grocery store trip. I didn’t ask her what was wrong with her as she began to question the bad genes that put autism in our family.
I’ve heard all sorts of possible links, and commonalities, but so much is unknown. No one knows exactly where it comes from. There is no cure. There’s learning to cope and autism awareness. You see it in the form of meltdowns as long as you stop assuming all kids are bad.
At this point, having gotten past the harder stages and facing the social and emotional pain to come, my kids have given me a gift and education that have made me a better person. I hate that this is the road they have to walk because it is difficult and painful, but I feel gratitude for being chosen to help them find their way.
My autism awareness became my trial and error process in figuring out what makes my kids happy, and how far am I willing to go in mutual discomfort to help them adjust to neurotypical expectations.
While this can be a lonely place, it has a magic that I can only see when I try to look through the eyes of my sons. They are intelligent and observant. They don’t ignore the questions of life based on societal norms and what should be ignored in politeness. They ask the bold questions and want to know why and how. I like to think I get this from them.
With the space of learning who we are as individuals and as a family, I’ve been able to follow adults with autism on Facebook and they’ve been healing to me. They’ve given me answers my children cannot yet articulate. When I’m on Facebook. I’m blogging and adventuring and posting, but rarely reading what others post anymore. I think that’s what happens when you get to live the life you want. You stop obsessing over other lives that aren’t yours.
There’s one girl I follow that has inspired so much hope in me. She has down days, but the fire inside of her makes hers the voice I would want on my side when I need an advocate. She has taught me that it’s not enough to teach my kids what is expected. I need them to set their own boundaries and know when and how to fight for those limits. She taught me that I am failing them by teaching them to be complacent and acquiesce to others because of an ideal that neurotypical is normal and right. That’s how you raise a victim.
The comfort from other families is knowing that I’m not the only one who wonders if my kids will ever live independently. I’m not the only one who worries about my kids having to care for each other if I die before my kids do. I’m not the only one that has to fight school districts and Regional Center as well as Social Security and In Home Supportive Services. I will not be the only parent to have to go to court for guardianship of my children once they become adults. I’m not the only one who feels that Autism awareness groups are not on the same page with my boys. And I’m not afraid to share that being test subjects for an autism cure was no longer empowering, but frustrating and difficult as a family. I’m not the only one. We are not alone.