My son Isaac has Down syndrome.
That can mean a lot of different things. It means he is more prone to have thyroid issues. He is more prone to skin problems. More prone to have eye problems. More prone to have sensory issues...and the list goes on and on.
Some people think--like myself before I had him--that it means he is perpetually happy all the time. This isn't really true, but his "happy" often manifests outwardly as sheer joy. On the flip side, his "sad" manifests as complete and utter devastation. I try to explain that to people when he is wailing miserably over something small, like the fact that I said we are going to have meatloaf for dinner. And, by the way, my meatloaf is delicious...really.
On parent-teacher conference week, it means that I get to hear phrases like "scored in the severely low range" on many of the tests that they administer to him. Because of this, and the fact that he can't communicate as well as most nine year olds, people often act surprised when they see him doing anything that requires the least bit of intelligence, like repeating word for word a favorite Disney movie. People will, in awed tones, say things like, "Well he must understand something to be able to do that."
Yes, he does understand. Much more than many people know.
Don't get me wrong. I'm never mad when people say stuff like that. I see it as an opportunity to educate them about how much many people with Down syndrome can understand, but what gets lost as I talk with them is that Isaac has an intelligence that's hard to put your finger on. I can't quite figure out how to explain it.
I suppose an example will have to do. This morning as I was running around trying to get everyone ready for school, inwardly lamenting the fact that I was slipping on letting Isaac do his morning "get ready" list by himself. I was wondering what my life would be like if Isaac could, like a regular nine year old, get ready on his own. I was wishing I could handle the fact that he can't just a little bit better and be more organized or something. I was really feeling bad that we haven't had time lately to let him go at his own pace, but he can be sooo slow. And when I say slow, I don't think you can imagine the kind of slow I'm talking about. I mean one morning I was determined not to help him get his breakfast and that kid took one hour and fifteen minutes to make and eat breakfast. If he puts his mind to it he can be done in 30 minutes with breakfast, no faster. He really does take forever to eat, but it doesn't help when he is stopping at every turn to imagine that he is Po, the Dragon Warrior, or Puss in Boots.
This morning I was rushing around and told him to go to the bathroom to do his five bathroom things. When I came back five minutes later, he was still standing in front of the toilet imagining. I said, "Isaac, I shouldn't have to tell you to pull your pants down and sit. You've known that for a long time." At some point during this very normal morning we were at the sink together, and I was helping him wash his face when he leaned in and gave me a hug. He hasn't been a big hugger lately, and when I do get one it is short and lackluster. Well, this morning he stopped and looked in my eyes and just kept on hugging. He snuggled until I bent down so I could enjoy a little head resting on my shoulder and a tighter squeeze than I have gotten in months. I can't tell you how badly I needed that hug this morning.
I can never explain how he knew that I needed it, but he did. He knew. You see, he has his own special kind of intelligence, and I don't want to know what my world would be like without it.
