Wednesday 15 January 2014

The New Normal

As we go through our application process, one thing that keeps striking me is how much our lives have actually adjusted to accommodating Alex's needs.

It's just a given that we can't run the dishwasher, vacuum or the washer and dryer while Alex is home and awake.  To the point that we will plan outings on the weekend just so that I can get laundry done.  Yesterday, I had four loads to do and I missed my timer on one of them.  At 3 pm, I realized I wouldn't be able to start another load until 9 pm at night (which would be a problem if we had an early-night bed-wetting incident).

Certain toys must be kept locked away or Alex will destroy them.  He likes chewing on plastic and it's now part of the criteria when I'm in the store.  Nathan really liked a particular plastic fire engine but I knew it wouldn't last more than a day or two.

The rooms upstairs have to be kept locked while Alex is home to prevent him from destroying our things.  Which means I have a limited opportunity to air them out during the day.  If I forget to go upstairs and open the doors after he's at school, then they stay closed and the air gets stale and the heat or air conditioning doesn't circulate properly.

If both children are home with one adult, we know not to plan on doing anything.  They will require constant supervision.  On some days, it's bad enough that even going to the bathroom is enough to allow a crisis to develop.  And forget going out.  Taking the two of them to an unsecured location (someone else's house, store, park, etc.) needs two adults at a minimum.  An extra adult is needed for entertainment events (movies, shows, hockey games) so that there is always someone available to focus on each child.

We have more teacher meetings, more doctor's appointments, more travel to get to specialists, more paperwork for grants, aid, etc.  I have to be more prepared in all situations, winging it is not usually a good option.  These are the main reasons I couldn't hold down a job outside of the house.  There's simply too much to get done.

Those are just the notes off the top of my head.  We very quickly adapt to changes and those changes become the new normal.  I'm shocked when I visit friends with children and they can just send them off to play in another room, or let them head off to visit a friend without supervision.  Or the one which hits me hardest: when the child can tell their parent about feeling uncomfortable or needing something. 

I think those kind of reality checks are good in that it keeps me grounded, but it also drives home that my life is different, which leaves me feeling isolated.  It's easier to accept things if I'm not thinking of how else it should be. 

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