Tag Archives: progress

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!)

Look, Ma – No Hands

The day starts off as such a beautiful, clear day – sunny and almost warm. I decide to ask Nigel to accompany me to the grocery store to pick out a different cereal in addition to what he usually has every morning. He agrees. We walk in the store, side by side, and head over to the organic produce section. “Where are the coconuts?” he asks. I tell him that they are probably in the regular fruit section and point him in the general direction.

He walks over by himself, and I watch. Not because I think I need to, but because, once again, I marvel at his ability to filter all the sensory input that used to be agonizing for him. The luxury of this – to me – never wears off. The sheer joy of it. It is comforting to see that he is happy, not distressed in the least. His gait is confident, purposeful. I look down and pick out some broccoli. In a moment I look up and see Nigel, fifty feet away from me, across produce stands and people and carts, and he is standing there looking at me, a big smile on his face – eye contact, even. He has found the coconuts. I smile at him, too, for so many reasons. He comes back over to me and asks if he can have a coconut so that he can make a replacement for one of his shell-cloppers from Monty Python and the Holy Grail. He likes to clip-clop his way through the house, acting out scenes from the movie. He made a pair of cloppers about a year ago, and one broke. Of course I will let him get a new coconut, but I ask how much they cost because I want him to be aware of things like that. He briskly walks back over to check. “Two dollars,” he says. “Is that okay?”  Sometimes he is so cute. I assure him that it’s fine, then suggest he go pick out his cereal. He returns a moment later with his completely appropriate, healthy choice (no, I’m not being sarcastic – he has learned not to bother asking for anything with refined sugar, after years of being turned down). He then asks if he can look at toys – not to buy, he assures me, just look. I tell him okay, but be back in five minutes.

He returns as I am unloading my cart at the check stand, exactly five minutes later, brandishing a small Lego kit that he has somehow not yet acquired. He tries to bargain. “I’ll have this instead of the coconut,” he says as he picks up the coconut to return it. I gently remind him that he promised he was only going to look at the toys and not buy any. A blank look crosses his face as he remembers. “But it has a crystal wand,” he says in a small voice. “Maybe some other time,” I say. “We’re not getting toys today.” He reluctantly says okay and goes to put the Lego back. And as I finish unloading my groceries, I marvel yet again at this child who has come so far, who, as a teen, is doing little things on his own. “Look, Ma – no hands” for us translates to “Look, Ma – no sensory issues.”  Or, “Look, Ma – no meltdown.” Of course, he doesn’t say that, but I’m thinking it. And his sensory issues are far from gone; he has just learned to filter them and cope with them. He still needs earplugs in movie theaters and often covers his ears, is a very picky eater, and exhibits some sensitivity to light and touch, but overall he does quite well now. He also knows when he needs to diplomatically settle for a coconut over Lego, and maybe, deep down he appreciates the subtle reminder that that was what he wanted in the first place.

We walk out to the car and the weather has drastically changed in the half hour that we had been in the store. The sky is dark gray and the snow is blowing at us horizontally.  “It’s snowing!” Nigel exclaims with perfect inflection. We hurry out to the car and he stands by his door, waiting to be let in. I ask him to help me load the groceries and he complies. As I put in the last bag, I hope for a second that he has thought to put the empty cart in the stall without me asking him to, but he is back waiting to get in his door, and the cart is still next to me. There will be other teachable moments, when the sun is shining.

I put the cart away and run back to the car. We get in and Nigel pulls the coconut out from underneath his jacket. “At least I protected the coconut from this climate,” he says. I tell him that it looks like a perfect one for his project. I look at the windshield wipers flicking away the snowflakes as I drive home. I breathe in sharply and feel overwhelmed with gratitude for so many things. That smile, for one thing, when he found the coconuts – it was just for me, and I will treasure it always.

Right on Schedule

The future will arrive when it’s ready. Whether it seems so or not, your life is right on schedule.                                       –clipped from an old horoscope, author unknown

I have spent most of today thinking about the future, specifically, thinking about the subjects of yesterday’s post. I sat at my desk for an hour last night writing it, carefully wording what I meant to convey, not sure if I was doing it right. What I neglected to say was this: Even if Nigel doesn’t progress any further, even if he hadn’t progressed to the point where he is now, I would be fine with that. I hope for his progress, but not because I want him to change. I am so happy with him the way that he is, the way that he’s always been. I hope for his continued progress because it would open more doors for him. It would enable him to experience more of life, and that is what he wants, and I want that for him. We all dream for our children. Autism doesn’t put an end to that.

And so this morning, having been up late thinking about what I had written, obsessing about the future, I came and sat down at my desk, my big L-shaped desk with all my projects spread out all over it, and my framed family photos of my loved ones smiling at me, and my soothing candles and bamboo, and my eyes fell on that little quote I had taped to the bottom of my monitor. The future will arrive when it’s ready. I needed that reminder today more than I usually do.

Whether it seems so or not, your life is right on schedule. And so is Nigel’s.