Wednesday, March 26, 2008
I went to my first meeting last night. I went to our local chapter meeting of the Autism Society of America. I was a bit nervous to go. To be honest I wasn't sure what to expect, or who I would meet. I've never actually met another parent of an autistic child in person. I've spoken with many on the internet but never in person. I know that sounds so strange, but for some reason I almost expect autistic parents to look different. Not look different in a bad way, but different. Life with an autistic child is beyond the realm of imaginable for people who aren't living "the life". you almost get the feeling that an autistic parent will look tough, and tired, and broken, and worry lines, and almost be covered in full body armor, you almost imagine PECS pictures stuck on them, you can almost see them begging and pleading with their child to just eat one bite of food that day, you can almost see them charting potty times, and praying for a bowel movement soon, so that you don't have to do the "painful fixes", you almost expect to hear them screaming to god about why they are living this, you almost expect to see a parent with 12 arms flying in all directions...i don't know if this makes sense to all of you reading it, but i know it made sense to them. we had this discussion last night. It was an amazing 2 hrs. It was 2 hrs that I could mention something without having to explain it. It was a time when a parent shared a joy over a normal solid not painful bowel movement for his son and everyone in the rooms eyes sparkled and smiles formed in excitement for that family. It was a time when a mom mentioned meltdowns, and everyone's eyes showed pain and empathy, and exact knowledge of what she meant. She wasn't talking a toddler tantrum, she was talking an autistic meltdown. A meltdown that lasts for hours, that has no beginning and no end, a meltdown that raises body temperature to over 101 degrees, a meltdown that causes the eyes to completely dialate and roll back, a meltdown that causes enough sweat to pour off the toddlers body that their lips becomes dry and cracked and bleeding in a matter of 30 minutes, a meltdown that causes vomiting and dry heaving, a meltdown that ends in pure exhaustion with hours of sleeping afterwards, an autistic meltdown. After the meeting I exchanged phone numbers with many of the parents and we are going to get together, and talk, and let the kids be together. We need that as a family, I need that as a mother trying to figure out how to be an mom to an autistic child. I learned last night that I am Ben's advocate. It is my job to fight for everything that my child needs. I have no idea if this post will make sense to most of you reading it. I hope it does.