Saturday, May 8, 2010

It's Harder to Understand Than Have Pity

I went this morning to our local Early Years Centre, which has a special program called "Dads Can Play Too".  It's a pretty awesome idea - I was impressed to see that even the play group leader is a dude.  I brought both kids; Nana was happy to help watch Tyler while Alanna was running around.  I explained to the lady at the desk that Alanna was special needs (and had autism) right before she took off and ran away (her timing was impeccable).  Alanna was not herself.  She played with almost no toys, had poor eye contact and wandered aimlessly.  She took crayons and threw them.  It was almost as if she'd regressed six months in six minutes.  I don't think I've seen her this "autistic" in a long while.  Many of the dads were staring at her.  When Alanna was younger, many parents often told me they would never know she was autistic unless I told them.  Now that she is almost 2 1/2, this is a much rarer comment.  The typical sign is her lack of speech - many 2 year olds at her age are talking non-stop.  It was obvious something was different just in the way I spoke to her.  As I have been taught, I always use simple speech with Alanna to help her understand what I am saying.  I speak slowly and repeat.  To a dad of a typical kid it would look pretty odd.  Eventually one of the dads I met (his son was playing nearby) asked me, "She doesn't talk much does she?"  I explained, "She has autism."  He nodded, happy with the explanation but I could tell he didn't really know much about autism.  When we were leaving, Alanna had a small meltdown and the women outside watched her with concern, looking at me and her with pity.  Everyone tried to be helpful and I tried to be gracious in accepting it.

When I left in the car, I cried silently as I drove home.  I couldn't help myself, it was too overwhelming.  Seeing Alanna "interact" with a kid her own age was heartbreaking.  Talking to the kid was so easy.  It was natural.  No saying, "good looking", or "nice talking".  Just an easy, back and forth discussion.  She is so behind, I thought to myself.  These things are so hard for Alanna.  I forget how hard it is for her until I see a kid her age and see how easy and normal it is for them.  

Looking back now, Alanna probably did pretty well. Six months ago she would have melted down and lost it... I wouldn't have even been able to go in.  But she went into a completely strange place with strange adults and kids and was able to cope.  She was not herself but I am guessing she was overwhelmed by everything and shut it out to cope.  She was immediately all smiles and more herself when we got home.  So maybe it wasn't a bad outing.  I'm trying to think positively here.  I know that many of Alanna's repetitive behaviours and unusual interests are greatly diminished from six months ago.  

But I learned something today.  I have to admit I'm much more compassionate to people with disabilities now that I have a daughter who has one (go figure).  If you see a child with an obvious disability (or even anyone for that matter), don't pity them.  They are coping and if you feel sorry for them won't make them feel any better.  When someone tells you about a disability, they want your understanding.  It's to inform you so you know what's going on - it's not an invitation for you to say poor parent, you have a child with autism.  I know Alanna has autism.  I'm just telling you so when she runs around flapping her arms and doesn't talk you know why.


  1. Great post. I loved reading it. (so you clean the house AND are not afraid to be sentimental) :D

    Ok I want to stop myself, but I can't so what the heck. Here is my list of suggestions. Khaled is great at home. Its his safe place. He knows every corner, every thing. We go to the early years center too. Every week. It has been a slow progression. Kids keep changing, somtimes its busy, there is noise, lots of stuff going on, he clings to something that stays the same (like a car ramp, or a ball tower toy or the play kitchen area or snack time). This has taken time for him (he is 4!)
    Change is overwhelming. Its too much.

    This is how we did it. I did not sit around long enough for Khaled to start losing it. I would go in. Do one thing. Leave, either just go home, or later as he learned to be more resilient, walk around with him outside, or there is a play area behind the center, so just let him stim there. Then I'd come back.

    Slowly, we built this up so he had positive memories of being in there. Not like "Oh i go in there, this crazy mad place, nothing makes sense to me, I fall apart, mom/dad take me outside or force me to interact or play". He needed to be made to feel competent inside that place.

    Sometimes it was so tempting for me when he plays well with one toy there to stick around a bit longer and do another thing - but its almost like punishing him for controlling himself and working hard. I found if I thought about it that way - when I realized just how hard it is for him to play functionally with one thing outside his comfort zone, it was then that I started to think about it analytically (and stopped crying in my car etc).

    Although we did have a horrible experience at a restaurant yesterday and I spent pretty much the entire afternoon sulking in my bean bag, sipping hot liquids and swallowing tears.

    Its a good message though what you are conveying. You tell others about her not because you want gain some sympathy vote or win the parent of the year award, but to advocate for her. Good for you!

  2. People can be so well-meaning but just not get it. I was with another parent of an autie at a luncheon. She bumped into a sweet, but clueless friend from high school who said, "He's in preschool. Oh, he'll soon catch up and learn from the other kids." You could see the duct tape line our lips because, she was so lost about autism, it would have taken a whole day to explain it.

    They don't simply grow out of it. They won't learn social skills by being put in another room with kids. What they see as way behind is actually progress to us. I would go stark raving mad if I didn't have friends who get autism and the belief that God will cure Pamela (if not here, then in the afterlife).