Progress in developmentally disabled children is a funny thing. A lot like getting fat really — a subject I have enough experience with in which to opine. You don’t see weight gain in terms of ounces. Instead, it steadily creeps up on you. You aren’t sure whether the pants you just put on are really tighter or if they just shrank in the dryer. It could be that you are retaining water, after all. But the ounces keep building up until one day you can actually see it. Loved ones, seeing you every day, may or may not notice. But the nurse at the doctor’s office dutifully records it on her little chart. And that obnoxious co-worker you make it a habit to avoid keeps suggesting you join everyone for Zumba. (Which, in terms of tolerable behavior, is the outside of enough really.)
Developmental changes are just like that. You keep looking for miracles. Sudden “A ha!” moments of clarity or skill. You pray for your Helen Keller at the water pump kind of moment, but it’s not what you get. The reality is more like this:
Parent 1: “Did he just _______?”
Parent 2: “I don’t know. It sounded like it, but it could have been _________.”
Parent 1: “Only this time he did _______.”
Parent 2: “Yeah, I noticed that too. Let’s see if he’ll do/say it again.”
Parent 1: “He’s not paying attention anymore.”
Both: Shrug shoulders…
Life with Callum has been like this lately. We see little bits of progress, then question them, before ultimately deciding that – yeah- things are happening in terms of his receptive language, efforts to communicate consistently, social interaction, joint attention, motor skills, etc. It’s subtle, but it’s there. And, in the reverse of weight gain, we are actually thrilled to pieces at the number of people who are beginning to notice the changes as well.
A few weeks ago, Callum began taking us by the hand when he needed a diaper change. If we notice the need first, all we have to say is, “Come on, Callum, let’s go change your pants.” And he reaches out with his little hand and walks with us to the changing table. What impressed me even more happened a little after that. He had a little medical problem (for the sake of brevity, I won’t elaborate) requiring frequent changes and some topical ointment. Each time, it was uncomfortable. In the past, he would fight, not understanding mama was trying to make it better. But, suddenly, he began communicating to me the need for a change – even though it hurt enough to make him fuss and cry a bit. Whether this is receptive language or cause and effect or whatever one wants to call it, I know it is progress.
He has also begun to seek out more eye contact – for interaction rather than food. He also appears, with his very few words, to be having a bit of an argument with us when he can’t have something. Not screaming, but attempting to communicate. He has started interacting with his sister a bit more, giggling with her on occasion and tolerating her pulling him after her to play a role in something she wants. He doesn’t understand her play at all, but he is handling her efforts admirably. He seems to be understanding the concept of waiting a bit for something he wants. And, in the most heart-warming development of all, has begun cuddling with his big sister. She, 5, keeps forcing her affections on him and wanting to hold him while watching TV. And he –lets her and even seems to enjoy it!
Yes, progress is microscopic — until suddenly there is enough to see and celebrate. And it’s great when it happens.
But joy? Now that’s a choice. You can either choose to see how far you have to go or you can choose to see how far you’ve come. This is a journey in which you shouldn’t always keep your eyes on the road ahead. Otherwise, you’ll miss out on enjoying the charming little companion beside you.