The Label

We are currently at a crossroads with Grady, our son with Down syndrome.

He will turn three at the end of July. This means that although I've finally grown accostomed to (and very, very thankful for) Early Intervention services for Grady, it is coming to an end. The next chapter opens, which means a whole bunch of testing on him and decision making on our part.

The decision making is not easy - mainly because we have no idea what we're doing or what we should be doing. Part of this process is deciding whether or not to continue with developmental disability case management services. There are two very different schools of thought on this, and we didn't know which was the right one to take for our son. Knowing that our case manager hasn't had to be overly involved with us for the past two-and-a-half years makes me think it maybe isn't important for us. But when you talk to other families and think about all the "what ifs," then you think maybe you should look into it.

We did go through with testing to see if he would even qualify at this point. It included an hour of testing with a psychologist whom we met in that moment, in a big, sterile, empty and unfriendly room. The doctor herself was very kind and did the best she could with the task that legislative bodies have handed to her. But it was a frustrating and disappointing hour as Grady refused to cooperate, and much of it was beyond his level of understanding. And with the testing, the child must fail in the same exercise four times before you can move onto the next one. Well, when our stubborn Grady says he isn't going to do something, once is all we need. He was annoyed with the continual push to do these things he already said he wasn't going to do.

After that I got to sit for another hour or so to answer a slew of questions about Grady and his development. It's an emotionally depleting experience, and my favorite question came at the end when the coordinator asked, "What age would you approximate your son to be?" Um...yeah. Two and a half, would be my answer. Developmentally, well...that's hard for me to say, isn't that why I'm here?

Kai and I met with the psychologist on Tuesday night to go over Grady's test results. She places him about two steps behind "average" development...officially giving him the label of "mild mental retardation."


There's so much to say about that. About the inaccurate tests they do, how they really should see him in his own environment, and how there should be tests that measure a more full picutre of the child. According to the psychologist, the wise beings who put law together here say that one can determine before the age of three what "developmental category" Grady falls into and that will be accurate for his life. She doesn't agree with this at all, and neither do we.)

I'm feeling like maybe we should've postponed this "official determination" until the school makes you do it age 8 where it should be more accurate. But at the same time, I don't have a crystal ball to anticipate Grady's future needs. If he is determined to qualify for case management and whatever else comes with that because of this label, it's one less hoop we have to jump through later if unexpected things happen and we don't know where to turn. And it is one less thing that anyone has to deal with should something happen to Kai and me.

As for the DD services, that remains up to a committee. The psychologist recommends continuing them based on his "official label," but we'll see.


I know there is no rule about where Grady will be or what he can accomplish, and that he will have a full and happy life no matter what the future holds because we'll do everything we can to make it so. And it's not like they told us something we don't know. But saddling him with the actual label feels so wrong and as the doctor put it, "really hurts your heart."

This is not easy. Each new phase brings about interesting new challenges. Thank God for Kai. I know this bothers him too, but I appreciate that he thinks a little less with his heart than I do.

I look at other parents that I admire and think, "They've done this. We will be fine." Somedays it just doesn't feel fine, though. And when I have those days, I feel like we're failing Grady. It sometimes feels like when we're faced with decisions and transitions, that no choice is quite "right." I wonder if it will feel like this for the rest of our lives.
 
I'm thankful that these feelings are "sometimes." I'm thankful that these "sometimes" equate to maybe a quarter of the time or less. And I'm actually thankful for these feelings themselves, because it causes me to take stock of where we've been, where we are and where we should be headed. And it reminds me to focus on what's really imporant!