Thursday, January 16, 2014

Being an advocate and a warrior...

I chuckle to myself when I think about the plans that I made for my life and how I felt that I had control over them.  I knew that I wanted to be a social worker when I was like 8 (before that I wanted to be an astronaut, lol) and I always wanted to work with the elderly.  I had no desire to work with kids but then God gave me a child with special needs.  He put a desire in my heart to help others and the desire in my heart to make the world a better place.  He's put an even greater fire in me to make the world a loving and accepting home for Cooper. 
One of the places that I never imagine having to fight for acceptance is church.  I'd never dreamed that we'd be turned away from our church home (that has gladly accepted our tithes) because they feel that they can't meet our needs.  Let me explain Cooper to those that may not know him that well, Coop enjoys everything that other kids do. He loves story time, crafts, playing (just not necessarily WITH other kids but plays next to them. His brain isn't wired that way, yet) and being with caring teachers. How he's different is that he's functionally non-verbal BUT communicates through sign language, Ipad and is able to answer "yes" or "no" questions. He is not potty-trained yet but we're working on it. He may need help going from one activity to another or reminders to remain seated.  Luckily, he doesn't throw many tantrums and actually does really well (maybe, even better than typical 4 year olds) with following a routine IF it's explained to him (kids with Autism like routines!!).  So, really, he's not that much extra work than a "typical" 4 year old but he does require some extra thought.  I even offered to help with transitioning Cooper into an appropriate room and assisting the teachers in them getting to know Cooper. I offered up the idea of a youth member staying with Coop as a shadow and extra set of hands. It was a no-go.  It baffles me that in this day and age with all the info out there on Autism that this church doesn't already have a program in place.  Anger doesn't begin to describe the emotion that I felt upon reading their email response.  Needless to say, they'll never receive another penny from our family. I've sent out an email to another church today and awaiting their response.
I'm getting used to the looks from other parents and kids.  Fortunately, Cooper doesn't notice the looks when he's babbling to me or when he completely ignores the other kid's offers to play.  Cooper is happy to be in another world and that's how his brain is wired.  He's in a special needs preschool and he's doing well there. He's learning to play with other kids but those kids are more like him.  I try to help him interact with typical kids when we're out by saying "hi" or "bye" but I find that most typical kids lose interest really quickly when kids are not like them.  I pray every day that parents raise their kids to be more empathetic and reach out to play with those that may be a little different.  I also pray that parents teach their kids that it's not nice to stare when someone is different than them, too. Sadly, a lot of adults are still a**holes in that regards so I've mastered my momma bear glare and that normally gets them into making small talk and I get to explain Cooper. 
Really, when your child has special needs, you have to be prepared to take on the world.  It's a battle that begins the moment that I wake up.  It can be explaining to a teacher that a 38 pound 4 year old with a muscle condition cannot carry or drag a 10 pound backpack.  True story.  Yes, the other kids carry their own backpacks but the other kids aren't lugging around an Ipad and a lunch box full of gluten-free food (breakfast, snack and lunch) because the school won't offer him those options.  I'm still working out the details on that battle.  It's a new battle almost every day..(I'm buying him a rolling back pack this weekend)...
A friend sent me this and it's so true.  I've never loved another human being so fiercely as I do Cooper and I'm there for every single step of this journey...

I made this pic for Cooper the other day with a quote that I found on Pinterest.



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