Thursday, April 07, 2011

my very own stitch.

The question that I get never get asked is "what is it like having a child with Autism?". People will state "I have no idea how you do it" or "you are such an amazing mother" but that's where it ends.  I always respond the same way, which is, "I do what anyone would do in my situation".  From the outside, people either imagine having a child with Autism as impossibly hard or they completely underestimate just how difficult every day truly is.

If I had to sum it up in one sentence, I'd say "imagine having your very own Stitch, except he looks like you".  That is to say, he doesn't look like a cross between a 6 legged koala and a boston terrier, and he isn't your family pet, but his behaviour is not far off that of the out of control and destructive Stitch.  Add to that, you get to be Lilo.  You love this little alien with the passion of 1000 hot suns and no matter what happens, you will always stand by him.

The interesting thing about Stitch is that he isn't programmed to love or to attempt to fit in.  It is only through Lilo's unconditional love, stubbornness and patience that he begins to understand the concept of family, belonging and most important, wanting to belong.  Sure she gets furious with him, and he makes her terribly sad.  But through thick and thin, she loves him and will not give up on him.  
that's me on the left at 5 years of age and Max at 28 months


When I look at Max, I see myself.  He is a ringer for my side of the family.  It is an odd feeling to look into Max's eyes and wonder what is going on in his head?  Through intensive therapy, we have gotten him to a point where he understands that he is safe with us, we are his people.  At the end of the movie when Stitch says "This is my family. I found it, all on my own. Is little, and broken, but still good. Yeah, still good" I always look to Max and feel a semblance of comfort in the belief that he knows this is true, and that we will always be here with him. 

The hope, of course, is that Max will continue to develop new skills and be able to communicate and converse, to know happiness and fulfillment. It's hard not knowing if and when any of this will happen.  As Max's own personal Lilo, I try to maintain that fierce belief that anything is possible and naysayers be damned. As this very astute little girl said "Ohana means family, family means nobody gets left behind. Or forgotten".

6 comments:

  1. Achingly well said. And OMG, how adorable were you!?! You do look so much alike!

    ReplyDelete
  2. You're so right. Others don't really understand the daily struggle and stress - but even if you tried to explain it, it doesn't really make any sense unless you've been there! Anyhow, I get it, and I know you're doing a great job as a mum. Family and love count for a lot. Good on you for being so positive!

    ReplyDelete
  3. Beautiful sentiments, Kat. It helps us all get Max and the children out there. No one gets letft beheind or forgotten.

    ReplyDelete
  4. Oh, how badly I spell! Forgive me!

    ReplyDelete
  5. Alisa2:12 PM

    Reading this brought a tear to my eye. Amazingly well said.

    ReplyDelete
  6. tears in mine as well. perfectly written :)

    ReplyDelete