Compounding Complications

Lots of life is in the little things.  Not to discount the big things, but I know of many people who would love their jobs if only they didn't have to deal with . . . [some little thing].  I certainly haven't been the first to mention that with parenting, it is not necessarily the dealings of toddlers that wears one down, but rather the extra laundry because they snot you every time they hug you (on top of the dealings with toddlers).

Life with a kid with a disability* requires a tremendous amount of brain power devoted to the complications of the complications of normal activities.  Pants, here, are one example from our lives.  Suffice it to say I could pick many others (shoes are a big enough issue that they will merit their own post). 

We are working on potty training with Aster.  Potty training is a weird big deal for all kids and we have worked very hard to make it not feel like a big deal with Aster.  But everyone knows it is. So we have something that is oddly emotionally charged already.

Because nothing says "potty training post" like
an image of a lilac (April 5, 2015)

Then there is the idea that we do not know how Aster perceives the need to "go".  Based on other kids' experiences, the sensations are probably not "balanced".  He definitely feels heat, cold, pain and tickling differently on his right extremities compared to his left; it is likely that internal sensations are different.  Of course, he's only experienced what he has felt.  He cannot articulate what he's feeling, even if he were aware that it is different.  So we don't stress about the fact that he is still in diapers. Not a big deal.

Aster also has quite the ability to "hold it", which has led to large volumes of pee pouring out suddenly mid-afternoon.  So we always have spare pants handy and size him up in diapers (rather than pull-ups) to catch that volume,  Not a big deal.

Both Aster and Dianthus are skinny, so we need to buy pants that have the super adjustable inner waistbands inside in order for their pants to stay up .  This make pants more expensive, as most cheap brands don't have the adjustable inner bands and most thrift store pants have lessened elasticity. Since both grandmothers are on alert for Gap and Levis pants on sale (thans M and MiL!), this is not a big deal.

New pants falling down in the morning light
(and flower garden) May 3, 2015

Aster cannot manipulate zippers and buttons.  This is not a big deal because he is 3 and he needs someone to help him anyway, since he is in diapers.  Or he can just wear elastic waist pants.  Except that the hand-me downs from his brother that fit have adjustable inner waist bands. They are nice pants from grandparents that button and zip. "24 month" regular elastic waist pull-on pants will stay on Aster.  Which wouldn't be a big deal if he weren't taller than the average 44 month old.  The pants that stay on look like manpris.

In order to practice peeing independently, Aster needs to be able to pull down his pants himself and pull up and down a pull-up.  So, elastic pants and pull-ups.  Not a big deal.  Except above.

While I am sorting out his pants for the summer, I keep thinking that maybe I should be adding little loops to pants to make them easier to manipulate one-handed.  Then I am caught in a never-ending argument (of which I can easily hear both sides in my mind),  One side is totally for loops (and velcro shoes and magnetic snaps and every other device that will make dressing easier).  Early success leads to greater independence leads to more lasting success, this side argues.  In response, the other side argues, "so, are you going to sew loops on pants all his life?  Doesn't he need to learn how to do it right the first time rather than just putting off frustration?"  That side has a point, I acknowledge, but the other side quickly counters, "we don't even know if he will ever have the fine motor skills to push buttons through button holes-- why would you increase frustration and delay independent dressing over a skill he might never have?"  Adaptive vs. coddling?  Frustration vs. independence?  Work with the abilities he has or encourage development of new abilities?

I'd like to be able to do laundry without debating the nature of ability, disability, and alternatives. But I don't.

There are always extra little decisions and those decisions have consequences.

Aster has been peeing on the potty for three days in a row.  It's a big deal.

 

*I rarely think of him as a kid with a disability, but every other phrase I considered putting here felt even more off.  

As always, I do not pretend to have insights into lives of all parents with kids with hemiplegia, much less all disabilities.  However, I have had enough conversations to know that many parents cite the all the little things, and the big consequences of little decisions, as an area where they feel frequently misunderstood.