Isolation. Isolated. Singled out. Alone. Different from everything else. Closed off. Divided. Segregated. Kept apart. Separated. Disconnected. Quarantined. Weird. Discrepant.
Just some of the words that mean WE DON'T FIT IN. Tyler doesn't care if he doesn't fit in. It's one of the blessings about him, and one of the things I admire most about him. Yet it's one of the things I battle about most. I make sure the clothes I get for him are in style and what other kids his age are wearing. We've fought long hard battles with the schools to ensure he gets the same opportunities as "normal" kids. We work hard, very, very hard with him every single day about using manners and acting appropriately in certain situations so that he's more like others around him than different. So he doesn't stand out and bring (negative) attention to himself. Yet being different is what we like so much about him. I don't get it and I certainly can't explain it.
We are having a rough morning. It actually started last night. Uncooperative. Seemingly defiant. Set in his own idea of how things were going to happen. We've really tried to learn which battles to fight. We try to see the big picture and decide if enforcing something is more helpful than hurtful. Even when it seems to be hurtful, we have to consider if "letting it go" is really going to be more hurtful in the long run; will it cause him to act up to get out of doing something again since it "worked" this time? It's an ongoing quagmire for any parent. And though I've never been one to pretend like our tests and challenges are worse, harder, or more challenging than anyone else's, I know that sometimes they are. I know this because of the isolation we feel. Because of the loneliness and "left out-ness" we experience.
I don't ever remember saying the words and I KNOW that I've never heard them uttered from my husband's mouth. Ever. But they poured out today. They say the truth is often the most difficult thing to hear, but this was deafening. A truth I've always known, but one I've never admitted.
In a face-off with Tyler this morning, and doing our best to manage the situation and not allow it to escalate like we knew it potentially could, we had the additional challenge of trying to "hide" the situation from little sister's overnight guest. The girls were outside already, but bathroom urges had imperfect timing and Tyler's rage wasn't going to be immediately tamed for that.
The words came pouring out. "We can't have you embarrassing your sister and making it so that her friends do not want to come over. If you do that, Tyler..." He had to stop because it got him so emotionally upset that he got choked up. He's right. It's not fair. If I were that age, I would not want to go to a friend's house who had a seemingly crazy, out-of-control brother who yelled, argued, slammed doors, and acted the way Tyler often does. He can't always "ruin it" for her. She WILL end up resenting him beyond repair.
Then more words came pouring out. "We don't have any friends who want to be around this, either. We don't get invited to things anymore. None of our friends invite us to do anything anymore." And then, just like a little kid, "It's not fair!"
That hurt. On so many levels, that hurt. On one hand it hurt because it's very likely true. On another hand it hurt because it sounds like such an immature and selfish thing for a dad to say. But I felt it, too. I heard the truth in it.
Then even more words poured out. Words we've sworn we would never say. Words we know are not true. Words that we know are selfish and destructive. Yet they are words we cannot help but sometimes feel. "We don't deserve this, do we? We must be being punished for something."
Gasp doesn't even begin to describe it. I can't say that it took my breath away, but it really, really, really hurt my heart. And I don't think it hurt so much because he said it, or because he possibly really felt that way, but because of the truth in it.
It's so easy to say that faith will get you through things. That we don't have to understand the plan, we just have to trust it. But it's also pretty arrogant to believe (or pretend) that that's always easy to live by. I am weak. In so many ways, I am weak. I have faith. I believe that His plans are bigger and better than mine. But it'd be very arrogant of me to pretend that I am strong enough to accept that at all times. Especially in the tough ones.
We know that we are not the only parents in the world, in this country, state, or even on our own block who have to deal with these kinds of challenges. We know "we are not alone." But we are. Of our family and friends, in our circle, we are right now. Here and now, what we dealt with today. There is no one here. Even though I know of several people, in our circle, who I could have on the phone in two seconds, who could totally relate. We are alone. Because this isn't about the here and now. This is about the big picture. You complain enough and people think you're ungrateful. You have enough problems and have to say no thank you to invitations and people stop inviting you. You have to practice your special needs parenting skills in front of people who don't know what the hell you're doing often enough and you're judged.
There are always people who claim to understand. Who always offer to be there if you ever "need to talk." But that's really never what we need, though the offer is appreciated.
Just the other day I offered myself up for another to contact me to "talk." I know there are always people there who offer up, "I'm always here if you ever need to talk." Facebook makes public all those offers, whether to me, or to someone else in one of life's crises. While at least most of those gestures are genuine, as mine was, they're still very shallow gestures. Even it they're not intended to be shallow. They are.
Seriously. The last thing I or any one else is going to do when experiencing a "challenging moment," is call someone up to "talk." Talking in that type of situation isn't going to help. It's nice to vent once in a while, to just say what you feel and not worry about if it's really what you think and feel. To not worry about judgement of how selfish and pitiful what you're complaining or venting about is. Yeah, doesn't happen. It's bad enough the judgment you get from yourself for saying those things privately, let alone how you feel about yourself for daring to say them out loud to someone else. And if you can't not judge yourself, you really can't trust that the kind listener doesn't also judge you. So by the time you judge yourself, then worry about what a fool you've made of yourself to the listener...you're more emotionally screwed than you were before.
It's the regret that I know Scott will feel later, if he doesn't already. Usually the guilt sets in about a tenth of a second after the words come out of your mouth. I think guilt travels faster than sound, so before the words are even heard, the guilt has hit. But it doesn't stop the words. Or the thoughts. Or the pangs of hurt caused by the reminders that we are not normal. Our family is not, never has been, and never will be normal.
I know. I know. What's "normal?" Well, I love my family and my son with autism more than anything. And I really wouldn't trade him for anything. And I've even said myself that I wouldn't change a thing, because I know the levels of joy we've felt because of our experiences is sweeter than the joy "normals" could ever feel. But I'd be lying to say that I wouldn't like to try "normal." I don't wish my life were different, but I do. It's hard to explain.
But what we need, instead of "someone to talk to," is to continue to be invited. To not be judged for the parenting that nobody can truly ever "get" anyway. To be included and accepted. We don't have to be understood even, just not judged. We do the best we can. We work hard to know what's best. We are not just winging it. We are educated about this. We seek help and counseling and information about this more often than most people eat. We are not experts, but we DO know what we are doing. To the best of our ability, we know what we are doing.
I just want to not be an outcast. Or at least the blissful ignorance in thinking that I'm not, would be nice. That my family's not abnormal. I know that no matter who we socialize with, there will always be judgement. There will always be people who think we do it wrong or that they could do it better. We'll always be left of someone's guest list because of our "unruly" kid who bothers their kids. Or because we have had such a difficult time finding a willing and able sitter so many times that we've said, "No thank you" to invites more than we've accepted. Or because of the judgement in how we parent--though it's thoughtful, trained, and appropriate, yet it comes off to others as harsh and rigid. And as much as it seems like we should live by the old adage of who needs 'em anyway, it's hard to not be accepted. It hurts to be judged even though we KNOW what we are doing is right.
There are thousands and thousands of families out there who deal with the exact same things we do. But none of them have walked in our shoes. And we've not walked in their's. No matter how much we might have in common with another family or set of parents, we are still not the same. We still will feel isolated. Excluded. Left out. Shunned. NOT NORMAL. In a world full of people just like us, in a world full of people nothing like us, in a world full of "abnormals," we are completely alone.
We have each other. That's it. And hopefully we can keep it together.
