Featured Image

HarvestingView full piece

 

Nurturing a Special Child

But then, the bad days come

Jul 30, 2010

Funny. Just a few hours after posting that I’m on my way to become a force of nature, a soft wind blows and I’m all out of balance feeling like a victim, hoping that I never find out that it was a FREAKING VACCINE what triggered Joaquin’s autism. Because, yes, he’s always had social challenges, but sometimes I look at those past photos and videos and he doesn’t seem so “serious” to me. I see him smiling at us, laughing, sharing, expressing, reading books, responding consistently to us, being very typical looking. And then I find myself this morning changing his diaper, asking “do you want shorts or pants today?” and being bothered by the withdrawn non-answer of a toddler that when you look at through the lense of “autism is a problem”, looks like a crazy person deep in his own world of numbers and car rides from home to his waterfall spot.

And this all tends to happen when Joey announces bad news of having to work over the weekend, and I feel inside this horrible discomfort I feel also when he says “I’ll be there by 7pm”, and 7pm comes and he’s not here. And it’s all because somehow I set up this expectation of a break for me. A break from my life, which sometimes feels pretty exhausting. And it’s not like I want to go away to work on a project like before. I just want a break from being all Son-Rise, from being happy, and accepting, and flowing constantly with whatever Joaquin wants. Because many times I feel trapped. Unable to run away from this house and this situation when I feel like I don’t have the energy and attitude to take it.

And the fact that I need those breaks (and I feel so unhappy when I see them slipping away) bothers me, because it means that this still feels like hard work. Work that perhaps I would prefer not having to do — why else would I want a break from it?. It’s hard work to be the mom of an autistic child. It’s hard work to see and deal with the face of autism every day, and be the only person around from 8:30 am to 7:00 pm.

Yeah. Today I’m not very inspiring. It’s part of the roller-coaster ride…

Share this post: Share on Facebook Share on Pinterest Share on LinkedIn Share on Google+ Share on Twitter

4 comments:

  1. On Jul 30, 2010, Ivan wrote:

    Prima, mira que yo estuve pensando algo parecido a lo de la vacuna, pero al parecer no existe esa posibilidad, es algo que ya está programado… Mucho ánimo ! Yo no se, pero creo que Joaquín es una cajita llena de sorpresas.

  2. On Jul 30, 2010, Devra wrote:

    Oh, please, you absolutely need a break, regardless of whether you feel like it’s work or not. We all need breaks from our every day lives and routines. My daughter is not autistic and I relish the afternoons she goes to daycare and I go to work my part-time job because it is exactly that: a break in the routine. A break in the “mom-ness” of it all. A chance to be useful or creative or sloppy or whatever for just a little while that doesn’t involve a toddler. Don’t beat yourself up over needing a break; they are good for you, will keep you balanced and better able to be that happy loving mom Joaquin needs.

  3. On Jul 30, 2010, Maria wrote:

    Thank you both :)
    Actually I’m feeling much better… There’s this fly roaming the airspace of our home, and Joaquin surprised me acting so hysterical, it cracked me up. Imagine hysterical freaked out squeals in a little boy’s voice (the highest pitch you can imagine), and he’s freaking me out too, and I stepped on a piece of spinach on the floor, and we were both AAAAAAHHHHH!!!!

  4. On Jul 31, 2010, Mariamar wrote:

    you are absolutely inspiring!!