Name/Blogging Name: Jillsmo
# of children/diagnosis: 2 children: Child 1: Autism; Child 2: Uber NT
Intro in her own words: Jillsmo lives in Berkeley, CA with her 2 children, 1 husband and 4 cats. She writes about autism, family, cats and whatever else happens to go through her head at any particular moment. She always draws REALLY bad stick figures.
AW: What was your first reaction to your child’s diagnosis?
J: Denial. The Developmental Pediatrician who gave us the diagnosis had, 6 months earlier, diagnosed him with Global Developmental Delay and had told me, specifically, “He’s making good eye contact so he isn’t anywhere on the spectrum,” and then when we went back for our follow up, she changed the diagnosis to PDD-NOS. She explained it as being “on the autism spectrum, but not autism.” That was the mantra I kept repeating in my head, and to others, for the next 9 months. “He’s on the autism spectrum but he doesn’t have autism.”
AW: What was your defining moment of acceptance?
J: I got pregnant with Child 2 about a month after Child 1’s PDD-NOS diagnosis and remained in denial for the duration of my pregnancy. Shortly after Child 1 turned 3, it was around March of 2005, he started scripting. “I think I can, I think I can, I think I can.” I thought it was adorable. But then he moved on to script other things, and after a few months was scripting constantly, but never said anything else. Ever. It was a relentless stream of Elmo and Zoe’s lemonade stand. I was forced to start researching this “repeating things he’d previously heard” thing that he was doing during every waking moment, and as much as I tried to ignore how many websites told me this was a symptom of autism, it became rather obvious. The physical act of having a baby, in July 2005, was an enormous cathartic experience that snapped me out of my denial almost immediately. I spent Child 2’s first few weeks not marveling over my new baby, but mourning my other one.
AW: What inspired you to start your blog?
J: Allie Brosh inspired me to start my blog; it had nothing to do with autism. I used to hate blogs; I thought they were only about liberal or conservative blowhards spouting off on whatever their opinion on politics was, and I have no interest in hearing what other people think. But then I discovered Hyperbole and a Half and realized that blogs can be anything you want them to be; they aren’t just about politics. I spent about a week reading everything she had ever written, and I thought “I can do this.” Well, not the artwork part, but I can be funny and I can write that down and hit the publish button, too. So the blog was created with absolutely no purpose except for me to rant about whatever was in my head and maybe make some of my online friends laugh. Since autism is such a big part of my life it was natural that I would spend a lot of time talking about it.
AW: What has been the most rewarding aspect of being a special needs parent/writer/advocate?
J: That’s actually two different questions for me, so I will split them up:
a. I spend a lot of my time offline talking to parents in my school district about their children’s education and I help them figure out how to navigate the school district in order to get the best services their can for their kids; I would be doing this regardless of the blog, though. It is definitely hugely rewarding to be able to help somebody learn what their rights are so that their kids can the best education they can.
b. As far as my blog goes, the most rewarding aspect has been meeting adult autistic who can help me try to figure out what goes on in this beautiful head of my Child 1. They have been where he is and can not only help me understand what he’s thinking now but they give me a window into his possible future. They make me feel hopeful for him; after all, they went through all of this without the services and support he’s getting now, imagine how much healthier and happier he will be as a result of all the work we do?
AW: What advice would you offer parents of recently diagnosed children?
J: SUPPORT IS CRUCIAL!! You cannot do this alone. Even if your family and friends are wonderful, and unfortunately they so rarely are, you’re going to need a bunch of friends who can relate to what you’re going through; who you can vent to when things get hard. Don’t try to be a hero and do this alone, because you simply can’t. You may not be able to find a support group that you can meet in person (but who has time for that, anyway?) but you can find something online. If you need help finding a community, email me! I’ll help you!!
AW: Feelings on diagnosis in 6 words or less:
J: Not a death sentence.
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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.