Like any child, my Down syndrome son has a lot of behaviors that seem to be unique to his personality.  Not unique in that no other child has ever done such a thing, but that the way the behaviors combine adds up to something recognizable as just “so Joey”.

When my older son was small I used to write a letter to my mother once a month.  Included in the letters were his novel statements which we eventually ended up calling Steveisms.  To this day, if any of us read through them that person will shake their head and say “Oh that is so Steve!”

Joey and the Vaccuum cleaner

Joey and the Vaccuum cleaner

So here is a photo essay that speaks to my Down syndrome son’s particular way of doing things.  They represent moments in time that illustrate his way of thinking.  I don’t know that there is anything to be learned from them other than perhaps that even people who don’t appear to have much complex thought going on can have a considered point of view.  Expressed in comportment over and over again, one’s personality will come through . . .  

One day our vacuum wasn’t working very well.  I told my son that we’d need to take it to (the proverbial) “man” to get it fixed. I left it in the hallway and he kept passing by looking sad.  I guess he related it to what it’s like to not feel just right and need to go to the doctor.  When I was ready I found where he had set himself up to give it comfort with a blanket and by patting it and staying near until it was time for us to leave.

Another time he came to me announcing that he wanted to go somewhere.  I looked up as he revealed that he had put his clothes on backwards.  He seemed quite proud of himself.  I didn’t particularly have any errands to run, but he was anxious to go out and be seen in what he apparently thought was a clever display.  So I cooked something up and we proceeded into the public square.   

Joey's backward's outfit from the front.

Joey’s backward’s outfit from the front.

The backwards outfit from the back.

The backwards outfit from the back.

Joey loves Pokémon.  The number of ways he has configured, carried, sketched, and examined his cards defies pen and paper.  This photo communicates a bit of the fascination he has with organizing his world and his cards.  A batch of cards we just bought gets matched up with a book.

Pokemon cards

Pokemon cards


If at any time we are leaving the house he must be given fair warning.  He has to have time to pack up supplies.  Always including paper and pencil or crayons (and these days, iPad).  He’s gotten very good about planning for what he’ll need – even in the dugout.   baseball

And anything is likely to happen if he wants to create a moment of surprise!

Joey being silly

Joey being silly

 Or he can wear himself out completely making puzzles with Dad. That’s serious work!

Puzzles are hard work!

Puzzles are hard work!

Joey doesn’t like crowds or to be asked to fall-in with a group.  It’s so typical of him to go to a place apart, and to literally turn his back on whatever he’s trying to avoid.  Needless to say, that can complicate some situations.

grad

He also doesn’t like loud sounds.

headphones-1a

These headphones are a staple at any sporting or cultural event.  

coaster-1

The standard only changes when there’s a roller coaster to be found!

barber-a

Other events aren’t nearly so exciting. Zzzzz.

tiesAnd why on this Sunday did he choose to wear every single tie from his closet?  I don’t know, but it’s just “so Joey”.  (notice the pencil, papers, and iPad)   

 

People have asked if it is awkward or embarrassing for me when my son does these unusual things in public places. Instead of that, these events are so common to me that I forget anyone else might even be noticing.  But I should remember that he is also doing this as a 20 year-old.  That probably makes us stand out.

Perhaps it makes a difference that I know he is not doing any of this out of ignorance.  I’m actually quite impressed with his creativity.  I mean, nobody’s modeling this kind of stuff for him.   These are ideas and intentional plans he comes up with on his own.  

Down Syndrome Days might be different but still sweet

To read more of Jane’s articles, click the picture.

It’s very different from many years past when we’d literally be chasing him through the aisles of a store or event.  I’d finally reach him, catch him by the arm and he’d start yelling.  We were certainly noticed in those days!  What he does today can be amusing (in those days I was definitely not amused).  Because of that things are much better now – though still unpredictable.  If we do get noticed, I suppose I’d assume that people recognize it for what it is – it’s just his personality coming through!  

PS You may have detected the same beach towel wrapped around Joey’s body in some of these pictures . . . that’s a tale for another day . . .

About Jane Thurston

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