At age 18 my Down syndrome son functions at about age 4 or 5, which is a beautiful age if you think about it. He has no yesterday or tomorrow; there’s only right now, and everything in the world is new and interesting – at least for a few missing puzzle pieceseconds. So he can entertain himself, but you never know what he is going to come up with. On one occasion I unrolled a pair of socks that he had put in my older son’s backpack and found a full size light bulb. If you put something down in the common areas of our house, you’d better be willing to never see it again. Like a 4 or 5 year old, he’s only sporadically considerate of the concept of “yours” and “mine”. Curiosity and creativity are the culprits. The quickness and stealth with which he can pick things up and put them down again in a different place is truly remarkable. Pencils at school, important papers on the kitchen table . . . nothing is likely to be where it once was if he has passed by.

One habit that used to make me crazy is his bringing home rocks from almost everywhere we go.  It’s not really a messy habit, but one you have to watch out for when it comes to laundry . . . rocks in the dryer, over and over again, till I clued in. We also end up with bunches of rocks throughout the house. He knows where he puts everything so he must purposely put them where he wants them, but just to cut down on numbers I used to throw a few into the yard from time to time – until one day I realized that some big 6-inch ones had come from the grounds keeping décor outside a local store. I took those back after he went to school. They mean more to him than they do to me obviously; they’re rocks. Pile after pile, wash after wash: and then the payoff – – I was about to step over the latest stack in the middle of a common walkway in our family room when I saw this:

Jane's son created this Pride Rock replica from Lion King.Could Disney himself have created a better replica of Pride Rock? It is an engineering feat; it must have taken him a very long time to build it. He must have known where he intended to go before he got started. I was very impressed and proud of his ingenuity. I could have stepped over this for weeks if I had to, but then one day it was gone. I love it when I am able to get a snapshot into his mind.

There are also times when the picture is there waiting to be seen but I fail to see it.

It took someone from the outside to get me into the loop during the time of his habit of encasing his toys, cups, stuffed animals . . . everything . . . with scotch tape. We showed a visiting friend a 12”x17” box completely covered over with tape. The strips were perfectly straight and narrowly connected all across the top, leaving the toys inside untouched. Again, quite an accomplishment but I must have rolled my eyes or expressed displeasure at the amount of tape being squandered because in admiring his creative interest our friend said “I’d be buying him tape!” (Hmmm, I had been hiding it.) I don’t know if one is supposed to be able to actually feel a paradigm shift happening but at that moment scraping across the floor of a room in my mind was the new concept: these are not resources being wasted, these are the tools of his life. Not just miles of tape I will have to unwind if he’s ever going to play with these toys again, or piles of rocks underfoot – – this is the way I am going to get to know him, this is the way – – the only way – – he is going to be able to show me what he’s thinking. He has a very, very creative side; I need to celebrate that he has found an outlet! He’s not going to cost us a lot of money in music lessons or sports teams . . . what’s the price of a little scotch tape against the chance to find out who my son is?!

Since that time we’ve gone through paper by the case. Scotch tape and staples, every crayon in sight, they are all his constant companions and he will set up shop anywhere. I could never have gotten him to practice writing numbers and letters if I’d asked him, but leave him on his own and he has copied every Pokémon card from every book. He has created paper figures and animals, a full-size “Beast” costume from bits of paper held together with tape covering even his shoes and some gloves, and when a puzzle piece went missing he used his considerable skills to craft a pretty sweet replacement.

Down Syndrome Days might be different but still sweet

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He is always going to be found doing things we’d never expect and there are always going to be surprises (but fortunately the surprises aren’t as destructive as when he was younger). He will likely always be prone to picking up things that don’t belong to him (that I will have to return and apologize for). But that same curiosity has lead us to see into who he is, what’s important to him, and what he is capable of. The depth of these things we might never have known if I had continued to battle for “normal” rules of the house and hadn’t adapted, with the help of a friend, to my son’s way of working in the world.


About Jane Thurston

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