Tag Archives: blogging

On Blogging

“If you’re one of these people considering giving up on blogging in exchange for paying more attention to Facebook, Twitter, YouTube and MySpace, or whatever else they throw at us mere mortals, bear in mind you are giving up on something rather unique and wonderful.”                —Hugh Macleod

It’s funny how sometimes we never set out to do the things that end up being such an integral part of our lives. Take blogging, for example. I never really made the conscious decision to be a blogger. Two years ago this month, I had recently begun to homeschool my son Nigel, who was thirteen at the time. He had been diagnosed at age three with classic autism, and again at age five, because he was still not functionally verbal. Through many years of intensive therapy, he learned to talk and filter his sensory issues so that he could be mainstreamed in public school with full-time assistance. That full-time assistance was dropped in middle school, and horrible problems arose. I began seeing regressive behavior that I hadn’t seen in years, in addition to new difficulties that I had no idea how to handle. I turned to the Internet and searched for information on autism in the teen years. I didn’t find much, and I figured that there had to be other parents out there whose children, like mine, had been diagnosed in the early years of the autism “boom.” Those other parents of teens had to also be searching for information, and I wanted to provide a much-needed resource for all of us. I wanted to connect with them – with any parents of children with autism – and end my years of isolation. And so, Teen Autism was born. 

Initially, I didn’t plan for it to be a blog. It was to be a website, so I researched how to create a website. Not knowing code, this undertaking was hugely insane. I bought books, purchased a domain, and discovered through my host that I could use the blogging software called WordPress as a content management system (CMS). This sounded like it would work for what I was trying to achieve. I had to learn some code in order to install the software and get it doing what I needed it to do, and I was pretty proud of myself for figuring it out (after hours of head-banging agony). And then I started writing. I wrote on all of the topics that concerned me as the parent of a child with autism, and I categorized the posts on the sidebar so that other parents could scroll down, click on a category that they wanted to read about (sensory issues, bullying, language, siblings, homeschooling and many more), and all of the posts within that category would come up. I wrote and posted five days a week, trying to build up the categories with information for other parents to read. But I wasn’t really blogging yet.

Occasionally, friends or family would comment on one of my posts, and that was gratifying. My page views per day were increasing, and I received my first encouraging email from another parent of a teen on the spectrum, thanking me for writing. But it wasn’t until about four months later that I really started blogging, i.e. reading others’ blog posts and commenting on them. First Casdok found me and left a comment, and then Mama Edge, who had just started blogging and found me by searching “teen autism,” just as I’d hoped parents would. She left a comment on my post “To Catch a Fly,” and I went to her first blog, saw her blogroll listing many other parents of kids with autism, and I started blogging. It’s strange to say that I started blogging after I’d already written 105 posts, but that’s how it happened.

I listed my blog on Technorati and the Ringsurf page for autism bloggers, but other than that, I didn’t do anything to market it. I started building up my own blogroll and realized that I was reading so many blogs that I needed to set up a reader, which I did at Bloglines. My feeds have changed a bit over the last year and half, but I am currently reading 72 blogs, and the majority of them are autism-related. For now, that’s my focus. I intend to keep posting on Teen Autism until Nigel, now 15, transitions out of high school, and I’ll write about that experience for a few months. Afterward, my focus will probably shift to blogs about writing, which I wish I had time to read now. Almost a year ago, Nigel went back to regular school part-time (with assistance), and I resumed working full-time, so I had to reduce my posts per week. As a single parent of two boys whose father lives 700 miles away, I don’t have much free time. But the connections I’ve made through blogging are so important to me that when I do have free time, usually in the late evenings, I blog. It’s a lifeline for me.

But even lifelines have to be scheduled. I’ve been asked how I manage to blog, comment, work, advocate for my son, advocate for others (through volunteer work that I do as a chapter rep for the Autism Society of Oregon), and be a single parent. To be honest, I’m not sure how I fit it all in. Some days are very hard for me to keep it together. But there are three things I do that help me immensely. First, everything is scheduled, even showers. Of course, things always come up, so the schedule must have some built-in flexibility, and that’s challenging. But it’s essential. Second, I maintain perspective. Every night when I go to bed, I lie in the dark and take five minutes to remind myself that my kids are safe in their beds, we have a good roof over our heads and food in the kitchen, and I have a job that doesn’t have me on my feet all day (I have a lot of respect for people in service-oriented jobs). It’s a mental gratitude journal, reminding myself of the positives in my life, and it’s essential to my well-being. The third thing I do is just keep moving. My life won’t always be this busy, and if I keep moving, eventually I’ll get to a point where it’s a little less hectic. Sure, I’ll always “keep busy,” as my retired aunt says. And I certainly look forward to the day when I’m able to choose how I spend my time. But for now, with the little time I have available for chosen activities, I choose blogging. I may be an accidental blogger, but I am a devoted one. And a grateful one, too.

If I Blogged 10 Years Ago

I confess. When it comes to blogging, I do a lot of lurking, especially when I first discover someone’s blog. I feel like I need to get a sense of the person before I reach out. But I also lurk because sometimes, like when I’m reading about someone who’s just beginning their journey with their autistic child, I become lost in my memories. It’s been nearly twelve years since I began my journey, when Nigel was two and a half and I thought, Hmm. He’s not talking. He often doesn’t react when people talk to him. He can’t seem to interact with peers. Autism was the farthest thing from my mind. The child development books I owned barely mentioned the A word. “Autistic children do not show emotion or affection,” they said. “They live in their own world.” That told me nothing.

Thus began a process of referrals and testing and ultimately a diagnosis that, at the time (1997), confounded me. I went back to Barnes & Noble and found a copy of the DSM IV (first edition), looked up autism, and realized that it was quite different than what I had thought it to be. And I knew then that my son had it. No question. He fit all of the criteria. Every single one. I put the book back on the shelf and went full throttle into his intensive ABA-based therapy. It was certainly gentler than full-on Lovaas (Nigel’s program did not use aversives), but the frequency at the center combined with the home visits proved to be effective and beneficial. Nigel improved, but he did not “recover.” I slowly realized that was not going to happen.

And so, if I had blogged ten years ago, when Nigel was four and a half, I would have written on a daily basis about things very different than what I write now. There would be no Boy Scouts, no Nigelisms. No posts about how well he now does in grocery stores. Ten years ago I would have written about the veritable riots he had in grocery stores, malls, restaurants, while having his hair cut (even at home), and going to the doctor’s office. I would write about how he shrieked and writhed on the floor when I had to take him into public restrooms. How he wailed if anyone even walked past the door where the vacuum cleaner was kept. I would write about how fearful he was of hearing tests, even though I held him on my lap the entire time he screamed, and his traumatic lead testing experience. I would write about my frustration explaining to friends and relatives why he did the things he did. I would write about my joy if I found a helpful autism book, because there were so few then. I would write about Nigel’s rampant echolalia at age four and a half, how he often tried to use memorized lines from movies and fit them within the context of the real situation. I would write about his hyperlexia, teaching himself to read at age three and a half, before he could talk. I would write about how he greeted visiting relatives by reciting their license plate numbers instead of saying hello. I would write about PECS cards, visual schedules, home visits, and the dedicated therapists who tirelessly worked with him. There would be talk of the precursor to IEPs, the IFSP (Individualized Family Service Plan) meetings, which we attended every few months.  

If I blogged ten years ago, I would mention my fears that two-and-a-half-year-old Aidan also had autism. He exhibited the same extreme sensory issues as Nigel, and also had a significant language delay. But Aidan made eye contact. He didn’t line up the Hot Wheels cars along the back of the couch and tilt his head while staring at them, as Nigel did. I figured maybe Aidan had a touch of PDD, but I could see the difference between my boys. Even so, some of Aidan’s sensory issues turned out to be worse than Nigel’s, particularly his oral defensiveness and proprioception. I enrolled him in the same center where Nigel received his therapy, and Aidan received some OT and speech. (He was in speech until he was almost ten, and also had an IEP until then.)

Ten years ago, I would write about just trying to get through the day. At that point, I couldn’t even think about the future. I couldn’t imagine what my boys would be like at twelve and fourteen. I was just so preoccupied with helping them to be as comfortable as possible in this world. And trying to keep my sanity because I was so isolated.

And so, when I read those blogs written by parents of children much younger than mine, I don’t want to come off as a know-it-all when I say this, but I say it with true empathy and understanding: I know what you’re going through. I’m there with you. I remember it all. You will get through it and your child will improve. He or she may not be able to do what Nigel or others can do now, but in many ways he or she will progress. Your child will not be the same ten years from now. And neither will you. (And I mean that in a good way!)