My Wonderboy

The other day I mentioned that Wonderboy got another new diagnosis this summer and I have been wanting to write about it but needed to think through the privacy issues first. After taking some time to ponder, Scott and I agreed that this is something just as important to write about as the challenges and joys we’ve experienced as a result of our boy’s hearing loss, and that blogging as frankly about this new challenge as I have about other things is for the good—Wonderboy’s, ours, other families’. I know how much I have benefited from hearing other parents’ stories and advice over the years—during Jane’s cancer treatments, and Wonderboy’s early medical adventures, and during all sorts of challenges related to nurturing special needs children.

Information-sharing is a very good thing.

I said “this new challenge,” but the only thing new about it is that doctors put a name on what I had already been suspecting for some time. Wonderboy has mental retardation.

During my son’s first two or three years, any gaps in his comprehension were easily accounted for by his hearing loss and speech delay. But this past year, especially as Rilla (who is two and a half now) has zoomed past Wonderboy developmentally in many ways, we wondered more and more if there perhaps there was some other piece of the puzzle yet to be named. He is four years and nine months old, but he still doesn’t recognize colors by name—though he’s been signing color words since he was a baby. He doesn’t understand days of the week, is only just beginning to grasp “yesterday, today, tomorrow,” can’t count past three or four, enjoys baby board books but isn’t yet ready for storybooks.

He’s a dear, jolly, affectionate soul, the joy of our household. I’m not sure when I knew for certain that he had some kind of cognitive deficit overlaid on the hearing-loss challenges. I first used the words “mentally retarded” tentatively, questioningly, in an IEP meeting last winter. (He receives speech therapy and audiology services from our public school district but that’s all.) My words were met with dead silence around the table, and for once the school district “team members,” who usually have so much to say about everything, said nothing at all. I thought perhaps I’d blundered, had used a non-PC term, and after an awkward pause, the discussion moved on: we were there to talk about speech therapy and audiology, and nothing more was said about a cognitive deficit.

At the time I already had him on a waiting list for an in-depth evaluation with the behavorial/developmental clinic at the children’s hospital: an appointment Wonderboy’s geneticist and pediatrician had been strongly recommending for months. The wait was very, very long: the evaluation did not occur until this past July. By then we were reasonably certain in our own minds that autism was not on the table: based on everything I’d read, Wonderboy did not meet the social/communicative criteria for an autism spectrum diagnosis. And sure enough, the four-hour battery of tests confirmed that he is not on the spectrum. “But there is a cognitive issue,” the doctor said, “something you need to know…”

I’m not sure what official diagnosis I expected, but I know that the words themselves, when they came, even though I’d had my own suspicions, were a shock—not the condition so much as the terminology.

“Mental retardation” is a label with an awful lot of social baggage, especially for people of my generation. Was there anything more insulting you could call someone in grade school, or be called, than “retard”? And twenty, thirty years later, that slur is causing just as much pain and controversy as it ever did.

Being something of a word person, I was fascinated by the reaction the words got when we told friends and family about the diagnosis. Honestly, I think I had to spend more time talking to people about the terminology than the condition it describes. Even the Wikipedia entry begins with a long discussion of the various terms that have been used and discarded over the years—discarded after common usage coopted a clinical term for use as an insult. First “cretin,” then “idiot” and “imbecile” (indicating differing degrees of cognitive disability), then “moron,” a word invented by doctors in the early 20th century, and when that became a slur like the others, “mentally retarded” came into use.

I learned that the American Association on Mental Retardation renamed itself in 2006: it is now the American Association on Intellectual and Developmental Disabilities, and its preferred terminology for mental retardation is now “intellectually disabled.”

I confess that sounds a bit jargony to me. It’s hard to imagine using it in conversation. Also quite a mouthful is the broader term “developmental disability,” which does encompass Wonderboy’s physical and cognitive delays. I am seeing that term used quite a bit online, on special-needs forums and such. I suppose it lacks the emotional baggage of “mentally retarded,” but for us it’s a moot point anyway, because here in Southern California at least, “mental retardation” is still the clinical term in common use: it’s what appears on my son’s charts now, and whenever I walk into a doctor’s office and am asked, as I always am, “what’s his diagnosis,” among the list of medical and developmental terms I must rattle off is, now, mental retardation.

[2012 update: Now the accepted term, both in educational and medical circles—at least here in San Diego—is “cognitive disability.”]

Whatever you call it, the fact is that my boy’s brain doesn’t work the same way most four-going-on-five-year-olds’ brains do. At this point, he has great difficulty grasping abstract concepts. His language skills are actually quite good—as long as we’re talking about concrete things. Most abstract concepts seem to elude him right now. Developmentally, he is much more like a two-year-old than a four-year-old.

And he is wonderful. His joy, his eagerness, his abundance of love and affection—these are the qualities that melt me a hundred times a day, the qualities that make him uniquely him. He is his sisters’ darling. The way he laughs and literally quivers with excitement whenever one of us has been away for a few hours and returns home: his happiness is completely infectious, and I’ve seen him set whole rooms of people to smiling.

This is not to say there aren’t challenges: there are many. After the diagnosis, when fuzzy suspicion became clear understanding, I realized that I pretty much have two-year-old twins at the moment. No wonder I’m always wiped out! Pregnant, pushing forty, with toddler twins: you better believe I began cutting myself a whooole lot more slack after I fully grasped the reality here.

For me it is always better to have a name for something, better to have a firm diagnosis to wrap my head around. And so although those words were initially a bit of a jolt, in many ways they made life much easier.

I have volumes to say about all the different aspects of this newly defined reality, and much yet to learn. I learned a long time ago that the blessings that come along with a special-needs child are immense—and immensely beautiful. I love my little guy to pieces. Doesn’t that grin just make you melt? Oh, he is the sweetest boy! I was laughing last week because four separate people—two different PTs who saw him on separate days, his speech therapist, and her assistant—all remarked to me, spontaneously, independently, a variation on the same exact statement: “Your son is so much fun to work with! What a sweetheart he is.” 🙂

Ain’t that the truth.

Good grief, somebody clean that kid’s glasses!