Steps

Nigel, age sixteen, calmly noticing that there is only enough milk for one bowl of cereal: ย “I’ll just have toast this morning.”

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At the age of six, after he had spent three years in an intensive ABA-based program, Nigel started Kindergarten in a contained (non-mainstreamed) classroom through STEPS, Specialized Training in Education Program Service. It was a two-year program, and he did so well after the first year that I made a huge mistake, one I still regret: I tried mainstreaming him before he was ready. The results were disastrous, and fortunately we were able to have him go back into the STEPS classroom after several agonizing weeks of the regular. He seamlessly returned to STEPS and finished out his second year, making even more developmental strides.

Almost ten years have passed, and I’ve never forgotten the STEPS classroom and how beneficial it was for Nigel. But to be honest, usually it’s the acronym that I think of on a regular basis. It’s a reminder of the nature of development where autism is concerned – sometimes it’s one step forward, two steps back. Sometimes it just seems to be a whole series of steps back. And sometimes there are those blessed days when it’s one forward step after another.

Aside from some grouchiness due to Daylight Savings Time and some minor growling about having to do household chores, Nigel has, behaviorally and socially, been doing incredibly well. He still attends his social skills class every other week, and that helps a lot. But the fact is – he’s self-regulating just as well as he did when he was on medication. It took some adjustment time, but these days, he continues to out-do himself.

For instance, when we were planning his recent birthday sleepover with two friends, he thought that it would be fun to carve pumpkins with them, and I thought it best to prepare him by mentioning that no one should be obligated to carve the pumpkins if they didn’t want to. Nigel’s calm response (in his typical flat voice): “I most certainly recognize that.” (!) Additionally, at this point he has nearly mastered the art of the Unprompted Thank You, less than a year after his first one. And one morning last week, as he was going out to the shed to get his bike to ride to school (a feat that, even after a year, I never take for granted), on his own he remembered his helmet when I kissed him goodbye and said, “I love you. Ride safely.” Usually I notice when he occasionally forgets his helmet. I don’t know which shocked me more – that I didn’t notice, or that when I said ride safely, he realized that he had forgotten his helmet and went to put it on. But that – amazing as it was – was nothing compared to the thing with the toast.

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Aidan, my creature of extreme habit, my fourteen-year-old limited eater, always has cereal and milk for breakfast. It’s the only dairy he will consume. If we’ve run out of milk on grocery day, he refuses to have anything else for breakfast, and I can’t stand the thought of him going hungry. In the mornings, Nigel usually gets to the kitchen first to pour his own bowl of cereal and milk. Then Aidan staggers in and does the same thing. Once in a while, Nigel, on autopilot, uses up the last of the milk before Aidan gets out there. I’m sure it was never a conscious decision on Nigel’s part not to save any for Aidan. So, knowing that Nigel also likes toast for breakfast, I made a suggestion one morning when there had only been one serving of milk in the carton and Nigel had consumed it. ย “Since Aidan doesn’t like toast, maybe in the future if you notice that there’s only enough milk for one person, you could save it for him, and you could have toast.” Nigel negligibly nodded; morning tends to be his least verbal time. I figured that, at best, he might remember to save the milk after I had reminded him at least twenty more times (and no, I’m not exaggerating). I certainly didn’t in my wildest dreams think that two weeks later, after my mentioning it only once to him, that on his own he would pour his bowl of cereal, go get the milk, notice by the carton’s weight that it only had one serving left in it, and calmly, empathetically announce, “I’ll just have toast this morning,” saving the milk for his brother.

But that’s just what he did. He took another (big) step forward. And my heart swelled with emotion for my son, this wonderful soul who has never stopped trying.

Ed. note: Veterans Day has always been an important day to our family, and Nigel and I will be continuing his tradition again this year. If you hadn’t read it last year (or would like to again), I’d be honored if you would read my post about Nigel’s tribute to veterans. It’s one of my favorite stories about my son –ย and the veterans he looks up to.

16 thoughts on “Steps

  1. Tera

    wow tanya, that is so terrific. i can almost feel you exhaling just a tiny bit of air.

    nigel is absolutely fascinating me with his abilities. kaeden has also been doing some amazing stuff lately…finally (yeah, after 20+times of telling) he seems to grasp some concepts: at dinner: does anyone want the last of the potatoes ? instead of just scooping them all up onto his plate without regards for anyone else.

    have a special veterans day with your sons.

  2. Kate

    That’s amazing and awesome ๐Ÿ™‚ You know, I’d try to notice, but like you said, we’re all on auto pilot in the morning, and I may or may not notice how much milk was left in the thing before I poured it. If I poured it and none was left, however, I’d like to think then a lightbulb would go on and I’d think “Oh, I should save this bowl for Aidan.” Anyway random thoughts; judging how much is left of something has never been my strong point. (I usually err on the side of caution though and buy replenishments way before I will need something so I don’t run out.) Anyway good for Nigel!

  3. Kate

    Also, if I wanted to carve pumpkins at the party, I’d ask the two friends beforehand if they wanted to carve the pumpkins, so I would know ahead of time what I was doing, cus thats just the way I am. Before I get together with my friends, usually to go hiking, we usually go over all the details of what we will do so there will be no surprises for anyone. I’m pretty sure NT kids probably don’t do that, but it works for us and keeps everyone from getting stressed out! ๐Ÿ™‚

  4. Jess

    I love everything about this post. The empathy and respect that he shows for the veterans right alongside the empathy and respect for his brother. So fabulous.

  5. Carrie

    I love this post. I mean, **Love** this post. Nigel’s progress and accomplishments fill me with hope for our future.

    “I most certainly recognize that.” (!!!)

  6. Ken Lilly

    Even though I know this wasn’t written for me, I am just going to pretend that it was, because it answers so many of my doubts and fears I have been experiencing over the past week.

    Thanks for writing it.

    It is so difficult to peer into my son’s possible ‘future’. Especially when I have no idea of his true ‘diagnosis’.

    Your offer of a glimpse at your son’s ‘present’ is a real gift to a lot of people, and I treasure his, and your, amazing value. Thanks.

  7. Sheri

    I think I would have been so incredibly fortunate to see this picture of “it working” when we were in the midst of “it’s not working.” There’s so much out there on kiddoes and families in the midst of it all but not enough of those coming out on the other side of things….Thanks for sharing!

  8. Lex Savko

    It’s really wonderful to read how many steps Nigel is taking forward on an empathetic level. As a creature of habit myself, it’s something I can certainly appreciate when I’m on the receiving end of such courtesy & I always try to pay it forward in the future! That was very touching to read.

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