When Sam was less than two months old, I got his first developmental assessment from the Regional Center. Among other things, it informed me that he was in the 2nd percentile for cognitive development, and it went on to explain to me that “this means 98 percent of children of the same age are more cognitively advanced.”
Well, that’s cheery, isn’t it? And somewhat crushing to a mother still swimming in postpartum hormones and adjusting to life with a preschooler newly diagnosed with autism, plus a baby with a birth diagnosis of Down syndrome.
After the hurt wore off, I was kind of annoyed. How do they even know this with regard to such a young baby? He was a baby; he wasn’t exactly versed in how to flaunt his skills for the benefit of people assessing him. It just seemed awfully negative to pin him with that kind of number at such a tender young age. But whatever; that’s just how it’s done in the special-needs world, I guess.
As he grew older, Sam was periodically assessed by the Regional Center, by his Early Intervention team, by the school district, and by our medical group. Again, such is life when you have special needs. After a while, I began to just roll my eyes at the assessments, because some of what they score on is downright silly. I had an argument with the assessment team once over the fact that Sam couldn’t identify a picture of a cookie. He had never eaten or even seen a cookie in his life, so of course he couldn’t identify it! The team maintained that even if he had never eaten a cookie, he should know what it is. I maintained that I have never listened to opera music, and no one would expect me to be able to identify a specific piece of opera music; thus, a child who had never eaten sweets shouldn’t be expected to identify a cookie. I think we ended at a stalemate on that one.
But one thing I could never deny on these assessments was that they were correct on their evaluation of Sam’s expressive language. I have always felt they underestimate his receptive language—he understands nearly everything you tell him, and if you phrase it in a way to elicit a response, you can see very clearly that he understands it. But when it comes to expressive language, I haven’t been able to disagree with the assessors: He really has always struggled with spoken language more than any other area of development.
At age three, for example, his assessments for expressive language put him in the 2nd percentile and listed him as in the “significantly low range” and with an “age equivalent of 15 months.” In other words, my three-year-old had the language skills of a 15-month-old. Honestly, I couldn’t disagree. His speech really was quite limited. By this time his cognitive scores overall had gone up—he was still below average, which wasn’t unexpected, but he was no longer in the 2nd percentile. But speech…well, that was still an issue.
And so speech therapy has been the one area that I’ve really pushed. Our experience with Theo taught me that so much of frustration for kids comes from a lack of ability to communicate, and I didn’t want to see that happen to Sam any more than it had to. I knew it was going to be an issue because it almost universally is in children with Down syndrome, but I wanted to give him as many chances to learn to communicate as possible. I got him a speech therapist the moment he was eligible (18 months), we taught him baby signs as a way to communicate, and we’ve always talked to him a lot with simple but meaningful words to try to model communication: “Sam, look at the blue bird!” “Sam, do you hear the red car go vroooom?” And of course, lots of reading books to model language.
There are some children who face additional challenges, such as apraxia, that make spoken communication much more challenging. But that was never brought up with Sam—none of his teachers or speech therapists ever felt it was the case, so we assumed it was just a matter of time and practice for him.
So this year, I decided to enroll him in the Communication Readiness Program that our Down syndrome organization offers each summer. I was hesitant because it’s quite a drive from our house and because it would require me to more or less take the summer off of work, which makes things tight financially. But Chris and I discussed it and decided it was worth a try.
Well. That may have been one of the best decisions we’ve ever made. Sam has been in CRP for three weeks now—he’s halfway through the program. And oh my goodness, what a chatterbox he has become! He’s just about four-and-a-half years old now, and before the program started he was attempting to say a lot of nouns, but pretty much no verbs. And the nouns weren’t terribly understandable to anyone other than Chris and me. So he would walk up to us and say “Muff!” and we would know he wanted milk, but no one else would know that. And it was just the noun—he still really wasn’t combining multiple words unless it was to say, “Muff, mama!”
In the past three weeks, though, his language has taken incredible leaps! He’s still very noun-heavy, but he’s now added articles to them: “a book,” “a plane,” “that tree,” and so on. And he’s walking around naming everything—he’ll point to a box and say, “Mom, a box!”
He has also added a couple of verbs, including the word “eat,” which he gleefully says at any opportunity and is starting to combine with nouns: “eat hair!” or “eat cat!” (He’s a big joker, if you can’t tell!)
More exciting still, Sam has spontaneously uttered his first sentence…and then followed it up with a second and a third! This past week, I heard from the backseat of the car, “I…want…” I looked in my rearview mirror, and he was pointing at a toy. A sentence needs a subject and a verb, both of which he had, so the fact that he pointed to the object instead of speaking its name is irrelevant to me: He put together and uttered a complete sentence! He is now regularly wandering around going, “I…want…” and “I…like…,” both of which they apparently worked on with him at CRP. But the fact that he’s doing it spontaneously and appropriately, with no prompting, is the most exciting part to me—it shows me that it has really clicked with him, even if he’s still working to add the objects to his sentences.
When his speech therapist came over on Friday, Sam decided to try out another sentence. They were reading a book with the Signing Time characters, one of whom is a frog named Hopkins, who Sam calls “Hops.” They reached a particular page where Hopkins is throwing a ball in the air, and Sam pointed and said, “Hops has ball!” His speech therapist and I both gasped—he has never spontaneously put together a full sentence like that, and so effortlessly! I think Sam wondered what all the fuss was when I started wiping tears from my eyes and we both applauded and cheered wildly. Sam being Sam, though, he ate up all the attention, even if he wasn’t sure exactly why we were so thrilled!
This is what it’s all about, people. The thrill in progress, whatever progress might be for you. With any child, a new development is exciting and celebration-worthy. I remember doing plenty of it with Theo as a little one—and even now, when he masters something that’s challenging for him. But when your child has to work exponentially harder to accomplish something, the thrill and excitement is exponentially greater. Can one single sentence change your entire week? Absolutely. This was a hard week in general—so many tough things going on in our country right now—but watching my son spit out his first real sentences changed my outlook dramatically. I cried, I cheered, and I cried again. I bite back tears as a write this, because it is so exciting to see this progress in a little guy who has worked so hard!
And meanwhile, I give props to those who’ve helped him reach this point. His speech therapists, who have worked so patiently and positively with him over the past three years. His teachers, who also have spent countless hours speaking carefully and clearly, in a meaningful way, to teach him organically how to communicate. His big brother, who has worked with him on word pronunciation because he so badly wants the two of them to be able to really talk. And without a doubt, to the CRP team, who has somehow magically coaxed incredible progress out of Sam in the past three weeks, while he runs into class every morning with a smile and comes marching out every afternoon with an equally big grin. And most of all, to Sam himself, who has done the hardest of the hard work here, and whose progress is an inspiration and a delight to witness!