Speech, language development, and communication are notoriously huge issues with Down syndrome. We did a short stint of Speech Therapy for Finn, and stopped because (a) it seemed like a huge waste of time, and (b) the State was changing its Early Intervention policies and requiring families to seek services through their health insurance carriers, and our health insurance carrier was going to require us to drive many miles away to obtain services for Finn. I’ve had no regrets about stopping Speech Therapy – and all other EI services – for Finn. I’m sure at some point when he’s older he will benefit from various interventive therapies, but in his baby/toddlerhood, he clearly benefits the most from living in a houseful of people who, although we all dote on him, pretty much treat him like anyone else. He’s got a whole big family motivating him in the most natural manner possible, and I just can’t ask for anything better for him at this point.
This is not to say that I’m kidding myself about his developmental delays. Is he behind his “typical” peers? A resounding YES. I’m aware of it, but I don’t spend a lot of time dwelling on it. He’s happy and healthy and continues to make developmental strides on his own timeline, and I just feel pretty at peace with it all. The only times I feel less than peaceful about it is when we are faced with third-party assessments and evaluations (coming up; we have the first of two assessments scheduled with the school district later this week as part of the transition process, and his first IEP later this month), and when I start comparing him to other kids around his age with Down syndrome.
And this is where the whole speech thing comes in. I guess I am very unclear about how other parents assess where their child is at with regard to speech. Since Finn’s birth almost three years ago, I’ve read dozens and dozens of blogs by other parents of children with Ds, and I’ve come across parents who are terribly distressed at their two-year-olds’ lack of language skills, and others who report word usage of up to 50, 60, even 70 words, and signing ability of up to 100 signs.
I’ll say flat out that Finn doesn’t say many words. His vocabulary is thrilling to me, until I actually sat down yesterday and made a list of all the words I’m aware of that Finn can say:
I love you
But what really counts?
- Do variations of the same word (“Mom” and “Mama”) count as one word or two? To my way of thinking, it would count as two because it indicates an ability to grasp the concept of two different labels being applied to the same thing. But maybe I’m wrong on this?
- Do words only count that are used in the proper context? It seems to me that merely repeating what he hears doesn’t mean anything unless he’s able to apply it properly.
- What about words he says that probably only I can understand? For instance, “Lilah” and “I love you” sound almost identical from Finn (they both sound like “Allah”; we joke that he’s converting to Muslim on us), but I know the difference. It’s unlikely that anyone else would know the difference, though, or that anyone outside of our house would realize that “Allah” is even anything other than meaningless babble from him. I guess I question this, too, because when I read on someone’s blog that their kid with Ds can say 50 words, do they mean their kid can say 50 words pronounced intelligibly and used in proper context? Or do they just mean that their kid makes attempts to mimic up to 50 commonly used words that are not clearly enunciated and not necessarily used in proper context?
It seems to me that at the heart of it is cognition. Does the kid understand what they’re saying and actually use the words to communicate? A couple of weeks ago when Finn started stomping his foot and saying “Quiet,” very sternly when the dog was yapping, I was blown away. He gets it. He’s not just repeating something, he’s actually telling the dog to be quiet. Or when he picks up his play phone and goes, “Hi . . . babble babble babble . . .” and then ends every phone call with, “Okay, bye,” I can almost see the gears turning in his head.
Not surprisingly, I think Finn understands a lot more than he’s able to communicate. For instance, it’s interesting to me that at his age he’s still not saying “No,” but I am positive that he understands “no.”
I am a little bewildered by the whole sign language thing, too. Finn knows very few signs just because we’ve never made a point of encouraging sign language as a mode of communication for him. I don’t know if this is good or bad, and I’m certainly not questioning parents who do encourage signing – it’s just not where we’ve landed with Finn (despite, interestingly, the fact that Michael worked as a sign language interpreter for many years and is fluent in ASL), and we’re comfortable with it. He appears to have the means and motivation to develop verbal language, and I guess we’re just very laid back about it. Anyway, as far as signing goes, what really counts when parents say their kid can use 100 signs? Do they mean the kid actually knows what each of those signs means and uses them properly and specifically to communicate? Or do they just mean that their kid can sign “fish” because they’ve been taught the sign, but actually have no idea what a fish is?
I’d love some input.