Retiring Mom

I am retiring effective December 31st of this year from all my official roles and jobs held over the years at Down Home Ranch.

And they have been many and varied, from donkey trainer to program director (they have more in common than you would think, as it turns out.)

One role I won't give up, of course, is being Kelly's mom, except that looking back I realize how much I have had to step back and let Kelly and others assume the reins of her life.

It has been amazing to watch Kelly mature and grow through the years, from a teenager who hid behind me when confronted with an introduction to a supremely confident young lady who strides toward a stranger with her hand out and a smile on her face.  I feel sure this would not have happened had Kelly continued living at home instead of moving to Martha House in 2006.

Naomi and I were talking yesterday about this very matter.  Naomi also has a child with Downs, a 16-year old boy, and she commented, “I couldn't believe when I first came to work here how high-functioning all the Ranchers were.”

She went on to say that other parents have told her much of this “high-functioning” wasn't necessarily there when their Ranchers first came, and that recently, she had an epiphany.

Her boy loves chocolate milk, and was always after her to mix it up for him.  One day the lightbulb came on and she said, “Let me show you how to do it.”  To her surprise he mastered the process then and there.  (This works better with chocolate milk than folding one's laundry, I find.)

It's so hard for Mom not to extend the caregiving way beyond points that are necessary and appropriate.  I used to despair over Kelly's refusal to wash her own hair.

She hated the feel of the slippery shampoo and just would not do it.  I even did the “hand-on-hand” thing and poured the shampoo into her hand, plopped her hand on her head and rubbed it in.  Result: one very clean spot and strands of lank, greasy hair.

When Kelly was about 16, we left her with friends while we went to Boston.  When we returned, Gay greeted me with the news that Kelly could now wash her own hair and in fact had done so, with somewhat OK results, four times in my absence.

I guess the time was right, the student was ready, and the teacher appeared.  Some things remain a mystery.

But now, after five years, Kelly knows so much, and can do so many things– including things beyond me, like hooking up electronics, and all of them she either taught herself or was coached by others. 

And what will I do?  Well, I'll write that book I've been threatening to write for the past four years about how Down Home Ranch came to be.  I'll keep writing this blog and helping with other writing projects. 

I'll dedicate a fair amount of time to helping generate support for scientific research into Down syndrome, and the quest for effective therapies.

And other things you'll hear about along the way.  It's been a wild ride, and one I hope to continue to share with you.