Thursday, November 11, 2010

Is there anybody out there?

I read a lot.  I take great comfort in recognizing my family's story in other people's stories.  Perhaps it is human nature to know that we are not alone.  When you face the challenges of parenting a child with autism, circumventing and obeying the host of "rules" your child lays out for you, it is hard not to feel like it is impossible that anyone else could possibly understand your life.  And how you live it.

And no offense, but I honestly do not think one can truly "get this" unless they are living it.  It is just too much, too all-encompassing to understand unless you are in it up to your armpits. 

At this particular moment in time, I am feeling very isolated.  We are going through a cycle of extreme sensory issues, and thankfully I am now experienced enough to know that these issues will cycle out again, but for now, they are very, very real.  And very, very limiting. 

As one example, right now we are going through an extreme aversion to food smells.  Extreme.  It is very hard to find things to cook that will not make him feel as if his body is under attack.  Try going to the grocery store with a child who can lose all sense of decorum at the slightest whiff of banana. 

At times like this, my world gets very small.  There are few places I can go, few things I can do.  Honestly, it is a pretty lonesome scene. 

I know that there are other moms out there who honestly understand the bizarre dilemnas I find myself faced with.  Moms worldwide ask each other for advice on tips for facing parenting challenges, how you get your kids to bed on time, ways to sneak more vegetables into their kids, stuff like that.  But I'm looking for help solving slightly less common problems, How do I get my boy to keep the sleeves of his winter coat rolled down ?  How do you get your child to tell you if they've hurt themselves?  How do you explain to people what your child needs without coming off all "preachy"?

You are out there, right?  Other moms do have these kinds of questions...right?


  1. Yes, we do. And I'm sorry to say that I don't have any good answers. But I felt compelled to let you know you're not alone.


  2. Yes, we're here! And no, sorry, I don't personally have any answers. You're wise to recognise this as part of a cycle that will pass (eventually!) but that's not much help to you right now. People don't get it and I think a lot of us can feel isolated - until we come online and find there are lots of us 'out there'!

  3. I had someone the other day (as we were dicussing the latest doctor resignation) tell me it's not the same as a cancer doctor leaving. You "learn to live" with autism. WTF? I have to just walk away from comments like that.

    You are not alone. We are here. No answers but an ear to listen and arms for *virtual* hugging!

  4. Thanks Natalie,
    I hear you, boy do I hear you. Call me and we can get together for coffee (or bananas, which are also banned in my house)

  5. Yep, I'm here too. It really does help to know you are not alone. We happen to be going through a good cycle now. It does happen. My guy has tried some new foods and politely coped when things didn't agree with him.

    We don't do bananas - smell and texture - bleck! :-) Do you think having another smell like vanilla would help mask offending smells? Just a thought.

  6. Thanks ladies,
    I really needed the virtual hugs, and I hope you all know that your comments have been hugely helpful to me. Autism can be a lonely place sometimes...and apparantly, a place that is commonly void of bananas. And here I thought it was just us.
    You ARE out there. Thank you!

  7. I'm here. I'm really new to this..and feeling so alone. I have a little boy with aspergers who is just about to turn 9. He also has adhd and anxiety disorder. I'm struggling with how to help him at home, and don't feel he's in the right educational environment (montessori at the moment)..though I love it, to meet his needs. I'm scared and it's exhausting being his only advocate.

    So, you're not alone! Big hug!

  8. Thanks Julie! And please know that you are not alone either!