For two-and-a-half years I have written about the life of my Down syndrome son. I’ve carved descriptions out of words. I’ve shared photos of his days. The one thing I haven’t done is let him speak for himself. I thought this month I’d let the experience of being Joey come through in his own voice.
What we know about him is what he communicates to us. Most often it is repetitive, like a child. And he speaks in a childlike way. But he certainly does communicate! We had a typical conversation a few days ago:
Yes, Joe, Daddy is at work.
Yes, Joey and Mommy, stay home today.
“Stenen?” [his older brother Stephen who had just come home from college]
Yes! Stephen will be with us.
(contented sigh) “Together”
It doesn’t take much to know what is important to him.
Last week on vacation he said:
Not yet Joe
“4 sun go down”, holding up his four chubby fingers
Yes, four sun-go-down. [that’s the way he measures time]
“And our stuff . . .”
Yes, we’ll take our stuff.
The trouble is that he says this several times a day while we are away – beginning about 30 minutes after we leave the house. The good news is that once the sun has gone down, he’ll recognize it and he’ll count the days accurately each day until the vacation is at last over.
This is the way my son keeps order in his world.
Whenever we mention that we are going to a funeral or that someone has died he will go through the list of people he knows who we have told him the same about:
That’s right, Joe, Grandpa died.
Yes, Remi’s mom.
Mm hum, Juliet too.
You and I have memories as an overall life experience to propel us through each new experience. For some reason Joey has to bring a few to his conscious mind each time in order to sort things out. He does it the same way time after time. Probably so do we, only our brains just do it in rapid succession and in an unconscious way.
For a great length of time, perhaps a year or more, the first thing I’d hear from my son every morning – after I’d heard him look into the garage and see my husband’s side empty – would be “Daddy come back?”. I’d say, yes, Daddy will come back and be with us.
Randomly he will come into whatever room I am in in the house and say “What you doing?” And I’ll give him a run-down of my activities. Or if he notices that I changed my clothes he’ll say “Where you going?” Most of the time I reply that I’m not going anywhere. If I am going out he’ll say “I coming wis [with] you!” Which of course he is, because he is never left home alone, but he announces it with such enthusiasm that it makes me feel wanted.
Not all of his communication is so cheerful or positive.
Recently some workmen turned off the power here which meant Joey couldn’t be on his beloved computer. For a solid 30 minutes he sat on a chair in the dark office at the opposite end of the house chattering loudly:
“power back on”
“On! House is perfect”
“all them, go home, work over”
“no batteries “
“show Daddy what you’ve done “
“Oh, I’m sorry, lights back on? Yes!”
“Sissy, Stenen, no like it”
“Now what you’ve done! That’s it – you ruin it”
Eventually he came out, pointed outside and said “Sun! That’s better!” and went on his way playing with toys until the workers left. He had vented and was able to move on. A pretty healthy reaction really. Even though his vocabulary is limited he can give a very straight shot to some fairly complex things he is thinking.
Finally, while I was eating breakfast this morning Joey indicated he wanted to empty the dishwasher:
“Dishes, I do it!”
He takes a plate out and brings it to me at the table . . .
I point to the cupboard and tell him it goes up there, which puzzles me because I know that he knows that . . .
“I can’t reach”
So I get up, put the plate away, and empty the dishwasher . . .
Whereupon he says: “That’s it!” Yea, that’s it. A good way to get the work done I guess.
Often I forget that other people don’t know our Down syndrome son very well since he speaks very little in public. There is so much going on in him; I’m sorry that people have to miss it. My son sends me in different directions all day: mentally, physically, and even emotionally. As with a toddler, I pretty much have to respond the way he wants me to because he’s not going to let go of the thing that is on his mind.
I’ve got 20 years of responding to him now. I pretty much know what’s on his mind. Yet my boy can still surprise – I picked up a blue notepad when I went to make notes on this last conversation and he said “Ah, blue, that’s my favorite color.” Hmm, I didn’t know that.