I guess I will have to stop snuggling him.  I know that developmentally it is best to participate in age-appropriate activities with Down syndrome people, but this morning when he approached my breakfast table saying “Snuggle you?” I just couldn’t resist, so we ran to jump under a blanket with him laughing, and we played Peek-A-Boo with him laughing even harder.  It isn’t age-appropriate to play Peek-A-Boo with a 19 year old, but it makes him so happy that it makes me really happy.

soap-bubble-439103_640Most Down syndrome folks are more mature at 19 years than my son.  I might be wrong, but it seems like we are in a little bit of an in-between place developmentally.  Unless the individual has some physical handicaps that keep them even less aware, the Down syndrome teen –30 year olds that we know are well ahead of my son Joey in social maturity.   They have ideas and make plans.  They see their future as a place where they can accomplish some things that they see as interesting to do.  My son functions at age 4-5, where if there’s a crayon and a piece of paper around, that’s pretty much going to be a good day.  So while I am being educated to decide that we should focus him toward age-appropriate activities, how can I give up the things that give him light in his day?

Do I really have to?  A parent would, with anyone else, ask them to see that something they are doing needs to be left behind at some point . . . but does he have to do that?  Am I holding him back as much as it would be for others if I let him be playful like a child?  Is it holding all of us back from some place we need to go?

I haven’t answered these questions.  Maybe I don’t have to yet, or maybe I am too late in doing so — I haven’t answered those questions yet either.  What is right for him?  Where do any of us put our mind for rest and then pick up later with what we are required to do?  For now, his laughter is my measure of success.  I hope I don’t have to learn that it’s going to be appropriate for me to change that.

I don’t know when the answers to any of my questions will come, and I don’t know what they will be, but I’m holding on to the view that it’s not as though there’s nothing left to enjoy about being 4 or 5. It’s not as though there is nothing left for any of us to learn in that place . . . I have been a mother for more than 25 years, but I never knew until yesterday that the shadow of a bubble is a rainbow.

bubble shadows



About Jane Thurston

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