Sometimes people with good intentions can really hurt you. This is something I've come to realize over the years dealing with Jack's Autism. People say well meaning things that are just so wrong.
It's hard to incorporate our extended family into our lives because we live 1,000s of miles away from everyone. Being in the military is both a blessing and curse- depending on the day. It's hard when people come to visit because they have no idea what to expect... And neither do we quite frankly... Sometimes it's no big deal and other times it can completely throw the little guy for a loop.
It's something I've had to deal with more frequently recently as more people have come to visit us. And it begs the question how much and what do you tell people before they arrive? Many of Jack's needs have to be addressed in ways that people who aren't familiar with Autism just don't understand. While my parents were here Jack had a huge meltdown with his tutor and they were both horrified to see that he was forced to continue what he was supposed to be doing- even through the screams, kicking, and tears. But having been in this situation for years now we know that is best and that it does indeed work. But it's hard to explain that to someone who is only here for a few days once a year.
In recent visits I've had people tell me the reasons why they think Jack's doing so well. But most the time they're just not right. It's a combination of several very intensive programs- not one single thing. And a lot of it falls on me. But it doesn't seem that people realize that. I find it hurtful and offensive for people to tell me that he's doing so well because of his school or his tutors... I guess maybe it's because of some insecurities within myself. I'm really not looking for a pat on the back all the time. But it sucks to never be acknowledged for the amount of work I do.
And then we get to the "cure" conversations. People saying that they're praying Jack will be healed. That he will be fixed. As if he is broken. I don't at all see it this way. Autism is a part of who he is. He would not be the same boy without the Autism. I would love him regardless. But I love him for who he is now. And I don't want to change that (sure, a few less tantrums would be great, but you get what I mean). I don't think that Jack will ever be "cured" and I don't want him to be. I want to equip him to be able to function in mainstream society to the best of his ability. But I don't want him to be like everyone else. I love each and every one of his quirks. I truly believe that taking away his Autism would alter who he fundamentally is. And I don't want that. I have no doubt in my mind that he will be able to be a happy, productive member of society, Autism and all.
So most of the time I find myself biting my lip. Holding back tears. And trying to just grin and bear it. I suppose a bigger person would try to explain it all to people but I just don't really feel that it is necessary. These are things that will be much more important someday when we live near our families but for now I'm just going to continue doing what we always do... Doing what's best for Jack and our family. Regardless how the rest of the world sees it.
