Embracing Chaos

As far as I know, Owen never actually said “flugged in” meaning plugged in.  But I can’t swear to it.  With each of our kids a few baby words crept into the Simons family vocabulary and stuck there.  Owee does turn his ps into fs sometimes — so we speak that way to him sometimes, when we are trying to communicate.

This is not something any speech therapist would recommend.  For as long as I have known Owen, the therapists in his and our life have been insisting that we make him reach for it – ask him to use the right words and wait for them, give him heavy things to carry to increase his strength and balance, and so on.  One excellent teacher made me aware that the things Owen wears and carries should be “age appropriate” too – at 15, his backpack really shouldn’t have a kiddie logo on it, she pointed out, and we might want to encourage him to carry more age appropriate toys. (What, not the legless baby doll??)  So to speak to him in baby talk is certainly not good practice.  I know this.

But…it’s warm.  Words spoken that way come naturally, and seem to reach out tentatively across space to make a better connection in often unreceptive ground. Owen responds to those words. So I still say, “Flug it in, Owee!” without (mostly) thinking about it, when it’s time to buckle up in the car.

The first time I witnessed Owen flug in his own seat belt, I was amazed and delighted – so proud of him!  I had absolutely no idea he could do that.   To this day I have no idea who taught him or how they taught him to do it.  I know I didn’t.  I still get a jolt of pleasure every time Owen pulls that belt over and turns to attach it at his side. He may fumble to get the vertical piece aligned just so with the receptacle, twisting his torso, curling down.  Sometimes he has to hold the receiving part UP while pushing connector DOWN, since the very effort at junction can push it away and down out of sight.  But he can do that.  It means pulling up with one hand while you are pushing down with the other – as with so many things we do daily, far more complicated series of movements than we ever notice.  But he usually can do it, if I force myself to wait, and breathe deeply.  Maybe assist, if he’s having a foggy day.  That seat belt “click” it is a reminder that I still do not know everything about my son, that I don’t know everything he is or will be capable of doing.

 

Once a long while back, my Aunt Dorothy directed me to a book called Steps to Independence, a manual all about how to teach intellectually challenged people how to do things.  The author suggested it was possible for people to achieve a lot more independence than anyone guessed if you analyzed the task to discover how many pieces it was composed of, and then taught those pieces, or steps, separately, one at a time. The book was full of charts and graphs to illustrate the basic premise. I admit to not being very excited by that manual at the time I first looked through it.  No manual is very exciting reading to me.  And at that time I still had a chip on my shoulder about being Owen’s teacher or trainer as well as his chief cook, laundress, and bottle washer.  I was still resisting; I had not yet embraced my chaos. But still I found myself using what I read there.  It heavily influenced the way I work with Owen, and I still have the book. One step at a time.  One simple step, building on another.  Obvious.  Brilliant.

How many jobs today that we do for Owen could he have the satisfaction of doing for himself, not to mention the praise and appreciation for accomplishing, if we could slow down and teach them?   But finding the time (and patience) to teach them, step by step, is more difficult than just doing them ourselves.  Or so it seems.

When my brother Keith was a young guy struggling with a far lesser intellectual disability than Owen, I remember how hard it was for my father to let him mow the lawn.  Keith was, among other things, directionally challenged.  He couldn’t lay the mowed grass down the way that made sense to Dad – he just couldn’t seem to do the job the way my dad wanted it done.  Too bad Dad didn’t have the book…

Similarly, it wasn’t until my father-in-law experienced health problems and became unable to stand for long, walk far, or carry weights, that there was a place in his life for his special needs son Chuck to carry his groceries, wash up his dishes, and stand at the grill and utterly kill the hamburgers.  (Chuck was famous for overcooking hamburgers, which is a sin in my husband Edward’s family.)  Like my own dad, Dad Simons had been a strong, active, and able-bodied man most of his life.  It wasn’t easy or obvious to him how to incorporate his special needs person into it.  But the accident that disabled Hil Simons opened doors for Chucker.  I think there is a lesson for me there.

It’s wonderful to be needed.  It’s also not a bad thing to slow your world down enough to need help. I could probably use that reminder every day.

Flug it in, Wystan.