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!)

19 thoughts on “If I Blogged 10 Years Ago

  1. goodfountain

    I love that you write about how Nigel is doing now. Even though all kids are different and won’t necessarily progress the same, it’s reassuring to read about how things that seemed so unbearable at one point, do eventually get better, even disappear.

    And I lurk on way, way more blogs than I comment on.

  2. Carrie

    I agree 100%. I started blogging 3 years ago, when Rojo was 9. I don’t think I would have even been ABLE to blog when he was a toddler – going crazy was my full-time job.

    It gets better.

    It gets WAY better, even, as you so well say, they don’t “recover,” it still gets better.

  3. Kate

    Haha. My dad is 50 something and he still can’t stand vacuums. Don’t bother me. Everyone is different, I guess.

  4. Michelle S

    Daniel is 12 and he also was hyperlexic, same echoalia, (although he still does that) but his conversation is improving daily. Same sensitivies. Yup. It really gets easier. But new things arise, like hormones! (no pun intended) ha

  5. Jenn E

    This is why I try to take the long view and say to myself it will be different a year from now 2 years from now and so on but some days ooooo I’m stuck in the moment.

    Thanks for you a really great and empathetic and inspiring read.

  6. Pweshes Mama

    Thank you so much for this and for being there for us “newbie” parents to look up to.. gosh, even after such a long hiatus from blogs, I still get so excited after reading yours 😀

  7. babs

    I think you do have to take it in little bits at a time, though. Like you, I worked through it for seven years before I could admit that Little Miss will never never be like the other girls her age. I kept thinking that the therapies would make her “all right.” But this year I was finally able to say it–and at the same time see that she does have gifts and humor and a unique point of view, and that she will be okay. But if I’d had to face that fact at the beginning, it might have done me in. So thanks for being out there ahead of the curve and showing us what’s just ahead–we don’t have to see the end of the road yet, just the signposts along the way. 🙂

  8. Goldie

    stop making me cry, doggone it!!!!!!

    Thank you. you give me hope, b/c I am still in the midst of all those things you remember with such clarity. I could relate to almost ALL of it. But YOU got through it. more than that, you and your children are thriving!

  9. Michelle O'Neil

    When Riley was first diagnosed I clung to any words of hope. Anyone who said it would get better, hang on. I think the blogs are really helpful that way. When one person is despairing there are others to lift them up.

    It was so nice to meet you over the weekend. I hope your travels back home were peaceful.

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