Tuesday, June 11, 2013

I'm Not Complaining. No, Really! OK, Yes I Am.

My kids have autism.  We live in a big house.  A big house with lots of stuff they can get into.  A big house with lots of stuff they can get into AND other people who don't always remember that having 2 kids with special needs in said house means one has to sometimes alter one's behavior.  Like, for example, NOT leaving the front door wide open so that a child can get outside while Mom is busy with the other child on the 3rd floor.  Because kids with autism don't necessarily understand that that can be dangerous.  And if said child is non-verbal and she gets out of the house, it could be Really Bad.

So I'm in constant Alert Mode.  More so here than in our previous home.  We had alarms on the doors there, and there was no one else to open the sliding door "to let some air in," or leave a window open and unlocked because they "forgot," or to leave water in buckets lying around because they can't be bothered to empty them, prompting kids to get outside to play in that water.

I thought that when we moved here I would have 4 extra pairs of eyes on my kids. Yes, it's a big house, with lots of stuff, but I figured with 6 adults, there'd be plenty of supervision.
Which, it turns out, is not the case.
At all.
Don't get me wrong, I'm not asking everyone else to take care of my kids for me.  But if I'm upstairs giving one child a bath, the other is often on the first floor.  Is it too much to ask that whomever's down there makes sure that kid doesn't go outside?  Or play in the dog's water bowl?  Is it asking too much to NOT leave the sink filled with water, because it's just too tempting for WG, and I'll have to clean up her reenactment of Noah's Ark?  Or to just keep the damn door LOCKED, so she doesn't get out?
We've bought some new door alarms but, frankly, I don't know how much of a difference they're going to make if people keep forgetting to set them.  It's not difficult: You flick the switch from "off" to "on."  There are no codes, no numbers to call, nothing.
Hubby and I have asked for help in this over and over again.  But old habits are hard to break, and living with autism requires a while new set of skills.
I've given up asking for babysitting.  Because it ends in near-disaster.  Luckily, we have respite care through the Regional Center.  My in-laws may not be all too keen on having strangers in the house with them, but sometimes Mom needs a break.

It occurred to me that  the reason I look so frazzled is because I AM frazzled!  When we lived on our own we were able to create a safe, controlled environment for the kids.  Now, I live in a constant state of surveillance.  I'm continuously going up and down the stairs, checking on them, making sure they're 1) OK. 2) Not doing anything that will get them (or me) into trouble and 3) Of course, happy.

Add to this the frequent criticism, utter lack of space and privacy, and 12 hours of Fox News every day, and it's no wonder I'm about ready to tear my own eyeballs out sometimes.

But the worst part is that with my adorable niece in the house, my kids are often ignored. My in-laws take care of her while her parents work.  She's 13 months old, and, believe me I understand, they are exhausted by the end of the day.  But that means they're too tired to spend time with my kids.
Not because they don't want to.  And certainly not because they don't adore them.  They're just wiped out.
Which is another reason to use respite: It's not fair to ask my in-laws to take care of a baby AND my kids, who need constant supervision.

And here comes the selfish part:  I love my niece.  She is a character, and she's a sweetheart, and I love spending time with her.
I don't want to babysit her.
I certainly pitch in.  I'll play with her, hold her if she's upset, walk with her, etc.  But I've spent the past decade taking care of my own kids and working, and doing little else.  Right now, the time I have when my kids are in school is MINE.  For a few hours on weekdays, I don't have to worry over where they are, what they're doing, whether they're getting into things they shouldn't be.  I'm not constantly running up and down 3 flights of stairs, taking them to the park/pool/appointments/the bathroom. For a couple of hours, I'm just doing what I want  to do.
And I think I've earned it.  For all the years when I had NO help.  When we couldn't afford a sitter and Hubby was out of town for weeks on end.  For my lack of a social life.  For the fact that I gave up my career.  I have done what no one else who lives here has done.  That's not a criticism, I'm not better than they are.  But there are often some pretty strong opinions, shall we say, directed at me, from people who, quite honestly, really don't understand and don't know what they're talking about.

Which is what I keep reminding myself of. They haven't been in my shoes.  They really, truly don't understand. Their opinions are just that: Opinions.  Not facts.  Not set in stone.  If they think I'm a bad mom, well, they're wrong.  I've said it before, and I'll keep reminding myself.  I'm the one who's been with my kids 99% of the time.  I do the vast majority of caretaking.  And they are thriving.  Yes, their schools and therapies have a lot to do with it, but so do I.
I fight for them.  I am their advocate.  I am their voice.  I'm the one who holds them, cleans up after they've been sick, worries over the slightest fever or sniffle, feeds them, dresses them, takes them to the doctor, goes to their IEPs, talks with their teachers every day. I'm the one who figures out how to discipline without harm, to encourage, to help, and to stand back when they need to do it on their own.  I do this every day, and often late into the night, frequently on my own.

And, of course, I worry.

But I gotta give a shout out to Hubby:  He's an AMAZING dad, and the most supportive partner anyone could ask for.  He left work early today to help out: WG got sick at school, so I had to go to San Jose & get her, poor bunny.  LG needed to be picked up at school at 11:30, and my in-laws were at the doctor's office.   Of course, now Hubby & I are both under the weather (LG had this thing last week).  Who says kids don't like to share?

But I'm REALLY pissed off at this virus!  WG was sick for nearly 2 weeks in March, and she doesn't need it again!  So, GO AWAY, nasty virus thingy!!!!!!!!



Geosomin said...

I don't think it's unreasonable to want time for yourself.
It sounds to me like you are doing an amazing job with your kids and at the end of the day they and your husband and you are a close and loving family which really, is the blessing and reward all rolled into one.

azusmom said...

Thank you!

Yes, it is SUCH a blessing, and a huge reward! :)