Saturday, October 4, 2014

Autism: Secluded on an Island Where the Rules Only Make Sense to My Child

One of my friends recently watched the show "Parenthood" and privately messaged me to send sweet words of encouragement and to explain that they didn't realize what life was really like having a child with autism (the show portrays a family with a boy who is diagnosed with aspergers).  I had heard about this show and hesitated watching it because sometimes its just too hard to watch your life played out on TV.  I wondered how the writers would make autism look and didn't want to be disappointed or upset.  Would they portray autism as a burden or a blessing? Would they make the child look crazy or the parents seem overly depressed? Would they do autism justice.

Much to my chagrin, I decided to watch a few episodes.  I found that autism was actually a HUGE theme of the show Parenthood.  They successfully portray a family before and after the diagnosis of their son who has extremely high functioning aspergers (on the autism spectrum).  It seems that the writers for Parenthood either consulted an autism parent or that one of them has their own child with autism.  I say this because, they do a great job helping viewers feel the pain of not knowing what is wrong with the character with aspergers (before diagnosis), and way the parents suffer through diagnosis and the utter sadness they exhibit at of the loss of a future for their child (or the future they had envisioned at least).  Lastly, they successfully show the overwhelming chaos of life with numerous therapies and schedules!

I must admit, at first I was a little annoyed simply because the character on the show was so high functioning (in my head I'm thinking, whatever! I would be super pumped to have a child who could function that well!)  How could they, or why would they want to show a child tantruming for hours, eating non-edibles, eloping, biting themselves, repeating the same phrase 100 times,  kicking doors down, smearing poop on the walls, running naked everywhere--the list could go on and on.  Why did I want to see that anyway and who would want to watch that on TV?  Then I kept watching and found myself crying with the characters.  Yes, their son was high functioning but the struggle was evident.  Then I came to the conclusion that I still struggle with the fact that Bella is not diagnosed high functioning.  She certainly is at a much better place then she was (she is diagnosed with moderate autism).  She was recently evaluated and scored moderate in many areas (and even advanced in some academic areas--she reads over 30 site words already--smarty pants) but she scored severe in social behavior--so severe that she's at just under the social age of a two year old.  She's almost six.  That was a hard one to swallow.

Tonight a character on the show said something to the effect of "having a child with autism is like being secluded on an island where the rules don't make sense to anyone but your child".  So true.  I mean, we still cannot drive on certain streets without turning on the roads Bella is comfortable turning on....and we can only go a few places without full blown panic attacks....but that's our Bella.  It's a chaotic world for our children which spills over to us, the parents. 

So I guess I'm saying, I like it.  I like the show.  I know its a silly thing...but I find myself wanting to hug these fictional characters and tell them "it will be ok".  Then I find myself wishing they knew Jesus.  I say this almost everyday and I'm sure my friends are sick of hearing it: 


James 1:2-4 (my "go to" verse)
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds,  because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

That's all.  That's what I really wanted to say.

I love my Bella so much it literally hurts sometimes.  I count her a blessing more than I could formulate the words to explain.  She makes me a better person is EVERY WAY POSSIBLE.  My heart is ugly.  She helps point me towards the cross... where I can lay down all of the ugly feelings I have and be sharpened through the struggle, the worries, the anger, the disappointment, the loneliness-- replacing it all with JESUS and HOPE. So really, if you look at it, I'm lucky.  Autism is beautiful, it's hard, but God allowed me to be Bella's mom.  I thank Him for it, because I know God is true to His word... faith tested DOES produce perseverance.