I follow a lot of other blogging/facebooking parents of spectrum kiddos. For the most part, they help keep me sane. They educate and inform my opinions and ideas. They expand my horizons. They give me support. They give me hope. They show me what is possible, where we can go in time. They show me that it won't always be like this. They also show me that it's OK to be real and to say "this sucks." They show me that I'm not alone in either my experiences or my feelings about them.
I try really hard to keep the overall vibe of this blog positive. I don't want to come here only when it's hard and I need to vent, neglecting the times when it's awesome and I can brag. I want this to be a place that reflects our life: full of love, usually happy, often difficult, sometimes heartbreaking, but always...ALWAYS worth it. The last few weeks it's been a little harder to keep my balance. And because I follow those other parents...I realize that I'm not alone. It seems the overall trend in the community right now is "this is freaking tough." And little wonder...for most of us, school recently let out for the summer.
Today was the first day of Boo's swimming lessons. He was showing token resistance to the idea ever since I wrote it on the calendar at the beginning of the month. But he gives token resistance to almost everything. I just ignored it and didn't push. But when the time came this morning, it got really ugly really fast. He is scared of the very idea. I believe the real core of the problem is that there is absolutely nothing in his experience that even comes close to this, and he has no idea what to expect. When he doesn't know what to expect his anxiety goes through the roof. He bawled and refused to leave the house. Reasons he gave were mostly along the lines of being afraid that he would go underwater. No matter how much I assured him that they do not have you go underwater, we stay in the shallow part, Mommy will be right there to keep you safe...nothing helped. He just couldn't visualize it and he was terrified. I never insisted that he had to go, but I kept trying hard to encourage him to go, trying to help him understand what it would be like and that he would be safe and have fun. He would hear none of it. He kept begging to watch TV, play on computer, or play with my phone. I wouldn't let him have any of those things if he refused to go to swim lessons. That brought him to full blown meltdown. Not quite the nuclear variety I had seen in recent weeks, but a meltdown nonetheless.
And as tends to happen, Boo's meltdown brought on one of my own. He flung his body at me, pushing, swinging, hitting, kicking my body and shrieking high pitched sounds. I removed myself from his clinging limbs, which is no small feat, and walked to another room. I picked up my phone and started typing out a text to my mom. I wasn't three words into it before I couldn't see the screen for my tears. "I f*ing hate this Mom. I hate autism and I hate the agony and anxiety it puts my kid in. He shouldn't have to fight so hard to just BE. It's so damn unfair. I just want to rage but there's nowhere to direct it."
And even as I typed it, I felt like I was betraying my child and the entire autism community. I thought of all the blog posts and facebook comment threads I've read about how people would never dream of taking autism away from their child if such a thing were possible. And I know that its so much a part of who he is, and that I need to love and honor and celebrate it as such. But there are times, there are days, when if I'm being really brutally honest...with myself as well as with all of you...I have to admit that my real feelings are more along the lines of "autism can kiss my a**." And I have vowed to be honest here. Not that I'll tell you everything, but that I will keep it real. I won't gloss over the hard stuff, nor will I sensationalize it. Because the only way we can move others from pity or intolerance to understanding, is to be real. Because as my husband always reminds me, "it is what it is." There is no need to try to excuse or qualify anything. It just is what it is.
So today, yeah, autism sucks and I hate it. Not because it is hard for me, though it can be. Not because I have trouble getting Boo to do what he needs to do, though I can. Not because I have to adjust my hopes and dreams for my son to reflect both his strengths and his limitations, though I do. I hate autism because it makes it so damn hard for my son to just BE. I hate watching him fight his anxiety. I hate watching him writhe and rage when he can't stand the feeling of being in his own skin. I hate watching him try so hard over and over to be sociable with his peers only to be met with blank stares when they don't know what the hell he's talking about. I hate watching him instantly transform from joyfully blissful to terrified when assaulted by a sudden strange loud noise. I hate hearing him beg through tears "I just wanna go home" when he is home. Just as any parent, I hate seeing my child in pain.
And to be fair, there are ever so many more things that I love about his autism, and the person it makes him. But those just aren't making the highlight reel today. And that's OK. Those will appear in another post on another day, and hopefully it balances out overall. Because I promise you I don't always feel this way. But for now...it is what it is.