Response to a response

Last week I wrote a post, Henry Ford Hospital Diagnosis; I posted it here and on Tumblr where I also have a Favorite Monkey page.  A couple people reblogged my post on Tumblr, with the response that I was acting like Caleb's autism was a death sentence.  But then I realized that they are teenagers and they don't know what it is like to be a parent, so fuck what they think.

This blog is about how I feel.  And right now, yeah, there is a death of expectations in my life.

I have to mourn that Caleb will not be able to go through the same milestones that I expected him to.  When we have children, for the most part, we expect them to progress the way we did.  We imagine them having the same major life events that we did growing up.  When we learn that our kids aren't going to have that kind of journey, we worry that they are being robbed of something.

Now, there is this rise of people with autism who rally around the idea that autism is awesome, and I am glad that they feel so empowered.  But don't think for a second that I wouldn't wish Caleb's autism away.  I am doing everything I can every single day to make Caleb better, and if I am trying to make him "better," then obviously something about being autistic is undesirable.  That said, I never want Caleb to feel like he is undesirable.  He is the most amazing kid and I love him more than anything.  Can I love him without loving his autism?  I don't see why not for now.  Maybe when he is older and he isn't able to improve as much, his autism will be more about who he is.  But, for now, it isn't as attached to his persona. 

If you are able to keep a blog and tell me why you think having autism is awesome, then you aren't a person with severe autism, and you don't know what it is like to have severe autism, so you don't know if that is awesome or not.  Cause I am the one who sees my son struggling to communicate.  I am the one who sees Caleb getting frustrated with his lack of abilities to match the taste and ideas in his head.  I am the one who sees Caleb break down because I don't understand what he wants and he can't tell me.

So, yes, when you are 18, you know everything.
When you are a mom, you know nothing, but you feel everything.