What kind of world do you want.

The last week has been full of ups and downs for me (and NO it's not just the funky pregnancy hormones messing with me!). Last Friday Jonathan and I went to Chandler's "moving up" IEP (individual education plan) meeting. My little boy is starting Kindergarten next year & believe me when I say "I am NOT ready".

I know I don't talk about it much on my blog, but most of you know our son Chandler has autism. I purposefully do not mention it all that often because I want my son to be treated normally. I don't want people to see him as "that kid with autism". I want them first and foremost to see him as "Chandler". In so many ways he is just your average 4 year old little boy (except for the fact that he is the size of a 10 year old!), doing very normal little kid things. I guess we are "lucky" that he has a very high functioning form of autism, and over the last two years he has learned to function and communicate quite well.

However, I have reminders every day of the battle I am up against. For instance, I have an almost 5 year old that still tantrums like a two year old when he gets upset & often times he does not have the words to tell me what he wants. He does not understand what kinds of things are dangerous for him (despite us explaining it to him dozens of times). He is attracted to "shiny" knives, the bright red light that comes on when the stove top burners are turned on, he loves water & will jump right in the deep end of the pool despite almost drowning one time. His syntax is often jumbled and very difficult to interpret ("I want for to the dinosaurs box books green at the store"... Take a stab at that meaning???). There are lots of little idiosyncrasies that make up Chandler, but that's part of what I love about him. He can be very difficult to understand at times, but I believe he is full of potential.

One of the more difficult tasks of being a parent of an autistic child is having to attend these IEP meetings & hear about how other people view your child's abilities. I have very high hopes and expectations for my son, and I've had to learn how to be his advocate in a world that constantly puts limitations on him. I understand why they may "limit" him in some areas, but that doesn't mean it's not painful to hear that your child can't do what all the other kids his age are doing. I've had to find the balance of fighting for him in the areas where I know he is capable, and accepting the areas where I think he still needs help. It's not a fun thing to have to talk to 8 people for 2 hours about what your child can't do.

For now, I hold on to the hope that one day we will find a cure for this awful disease that is affecting 1 in every 150 children. As a parent it's terrifying to not know what causes it. You live in constant fear that you may actually be harming your child further with everyday things like the food they eat, the water they drink, the medicines they take when they get sick, and of course the vaccines they receive (should you do them, or should you stop them altogether?). None of the answers are simple, and no one solution seems to work for every child. It's frustrating and disheartening to feel so helpless when you see that your child suffers with something that NO ONE has an answer for.

However, I have chosen not to feel sorry for myself (and I don't want you to feel sorry for me either). What I DO want to do is help my son and the millions of other children that suffer with ND's (neurological disorders)find a cure. If it means I have to be more vocal about Chandler's autism...then so be it. I'll just have to trust that the world will still see in him all the potential that I see. It's a hard thing to trust other people with your child, especially when you fear that they will judge your child just because they don't understand them. But, that's one thing that I want to change for Chandler's future. I want this world to be a place that loves and accepts him even if he is never "normal". I know that's a tall order, but unless I stay optimistic and ever vigilant, it may never happen.

So, what kind of world do you want?

*This is a video of a little boy who is struggling with autism and I thought it was touching & very appropriate for this post :-) Enjoy!

http://www.whatkindofworlddoyouwant.com/