Playing the Autism Card?

So today I called some asshole an asshole in front of a bunch of parents and students at my kids' elementary school. Probably not my finest moment. And I am not anonymous, because most people know Calliope, so Calliope's mom just cursed in front of everyone. Awesome. As the parent of a special needs and constantly supervised child (which child, yes, does weird stuff), I already feel highly scrutinized, and now there's one more feather in my cap. Yay me. So what's the takeaway here? A) Don't lose your cool at your kids' elementary school/use foul language in front of the kiddies. B) Don't be an asshole. Admitting my role here, I will say, the other asshole and I were both probably some degree of asshole. But I'm pretty sure he was the bigger asshole.  Here's the tale:

I ordered a bunch of popcorn for a school fundraiser in Jasper's name so that he could obtain some prize for selling enough popcorn. Popcorn pick up time was today from after school (around 3:40) until 5:00. Knowing I had to take some extra time to pick up the popcorn after school, I called Calliope's therapy center to let them know I'd be about 10 minutes (I figured) late for her 4:00 appointment. I picked up Calliope and Jasper and drove around to other side of the school to where popcorn was being dispensed. When I got Calliope out of the car, she gave me a couple of angry noises and yelled, "Go backward!" I assured her we would still be going to therapy, but we just had to get something first. Lo and behold, there was an enormous line that was barely moving for the popcorn pick up. I hadn't expected that. I started to get stressed because I didn't want Calliope to melt down, as she had shown precursors. I was worried about her having to wait, and I was worried we'd be too late and her therapy would be canceled, which I feared would upset her today. I was annoyed about the long line, and I expressed these concerns to Jasper (pretty sure guy in front of me heard this). Directly ahead of guy in front of me was an official looking woman. I thought she was with the school, and I was thinking I'd have to leave and come back, so I asked if the popcorn dispensing would continue until at least 5:00. She said she didn't know, as she wasn't a school person but was there with her large group of Safe Key kids who made up a large portion of the line ahead. She said I could go in front of them. I accepted. So I guess that was me being a asshole, as I didn't ask permission from the one guy who had been between me and Safe Key kids, which I should have. In my defense, I was stressing out and had kind of forgotten him. I was thanking Safe Key kids when guy starts loudly complaining to the whole line about me moving ahead of him in the line. (Note, I put him and only him---he didn't even have a kid with him---one place back.) I said, admittedly angrily, "Fine, I'll leave." He said, "We're all waiting patiently." I said, "Sorry, are you dealing with an autistic kid here?" He responded, "Oh, now you're using your kid!" Look, I think, under the circumstances, him knowing my situation, his first asshole move was not letting it slide when I moved forward (I hope I would have let it slide under similar circumstances), but hey, maybe he was late to something too. But "Now you're using your kid" is when this guy achieved true levels of assholery, so I responded, "You're an asshole." He then retorted, "Now you're swearing in front of children." And I did feel like an utter dunce for swearing in front of all those people at the school. I apologized to all and went to him and offered a personal apology---"Sorry, I'm stressed." He kinda responded disdainfully. I left to take Calliope to therapy. And I felt pretty shaken. I was upset by the confrontation. I was worried that the elementary staff wouldn't be thrilled, worried that the other parents wouldn't be thrilled.  Honestly, I was not especially worried about the kiddies, as I think they often hear worse and were generally amused by the whole thing. But I'm really, really upset that I apologized to the asshole. Looking back, he was such an asshole. His whole attitude---accusing me of using my kid, condescendingly berating me for swearing in front of the kids. And in the first place (though I sympathize with his annoyance), he should have addressed me personally and not gone for public shaming. Pure asshole. I should have apologized to everyone else but re-iterated that the asshole, however, was exactly as I'd described him. Now, in fairness, the asshole might have another point of view on this. I'm sure I'm not remembering what was said verbatim, as I was a big ball of emotion. Asshole might even be entirely unaware that he's an unbelievable asshole; he probably thinks I'm the unbelievable asshole---two sides to every story and all. But this is my perception.

I guess mainly, I kinda just needed to sit down and vent, but with regard to how not to be an asshole, I'm thinking about how he and I could have better handled the situation. I should have tried to speak more privately to him and not publicly addressed him in response, even though he publicly addressed me. Even better, I should have just left. I should have not let my emotions get the better of me. But also, please never tell the parents of a special needs kid that they're selfishly using their kid. Yeah, we take the perks when Universal Studio gives us the pass so we won't have to wait in as many long lines. Because it's already hard enough managing our special needs kid there, but we do want to have the experience, we want our special needs kid to have the experience, and we want our neurotypical kids to have the experience. And we'll take what help we can get to make a challenging experience better. We take the bus to get our kid to school, because it helps. We take the extra support our kid needs at school, because she needs it, and we can't give her the experience going to school can. We take the nice people at church who are willing to watch Calliope so we can go to class. Okay, yes, we probably take all the help we can get. It alleviates some of the stress---yup, we take it. Is that selfishly using our kid? Look, I'm really not in it for the perks. Thanks to all who help us every day. And there are a lot of you. Thank you. 

Calliope: Missing Pieces of You

When Calliope was born, I wanted to do everything right. I wasn't going to have more children, and I was going to appreciate her and enjoy her to the fullest. I wasn't going to get angry about silly things. I was going to finally get it right with #4. And I did and do appreciate and enjoy her, but I didn't pay as much attention as I meant to, and I didn't refrain from getting angry about things that don't really matter. Of course we never achieve all of our lofty parenting goals, but somehow my failure hurts more with Calliope. I don't remember things well enough. My stupid OCD got in the way too. But I didn't realize we'd lose some of Calliope. I didn't realize she would gradually regress and that pieces of who she was would be lost. Or, at least, that parts of her would become so much more difficult for me to see, if they aren't lost. Calliope was "normal" until somewhere in the neighborhood of three years old. She walked at eleven months. She talked in sentences quite early. She was excited to go to her cousin's house, and she engaged in imaginative play with him. She lit up when Grandpa was around, and she wanted his attention. But somewhere along the way, she started talking less. She became less social. We couldn't communicate with her the way we used to. We were having so much trouble with potty training. She wasn't following directions in her church class for small children. She would run out of the house with no regard for her own safety. I realized I couldn't send her to the preschool where I'd enrolled her because they wouldn't be able to handle her. They weren't equipped for her needs. It didn't happen all at once. Anyway, I don't think it did. At least, it took me awhile to realize it had even happened, that something had been lost to us. And was I so wrapped up in my own mental illness that I didn't see what was happening as soon as I should have? I took her to a developmental pediatrician so that I could get a diagnosis, so that I could begin to seek help, get her into the special needs preschool. I wasn't surprised: autism. I don't know that "autism" means much, other than as a way to qualify for services. It seems to be the word we use for people who have some kind of developmental abnormality when we have found no other known cause. If I say my child is autistic, it could mean any number of things, but it is the word we use, because it's all we have. There is no known cause, but I have spent a lot of time wondering what happened, how it happened, if I could have gotten her help faster, and whether or not I caused it or could have prevented it. 

Most of the time, I just roll with it. I love my girl. She is still full of personality. She is still here to cuddle. Though we have some communication barriers, she still has language. She still makes me laugh. But there are times when I grieve for the pieces of her that I can't see anymore. Sometimes I watch a home video from when she was younger, and I'm amazed at the difference in her---in the past she will be talking and interacting with people in ways I don't see now. And I curse my memory because I can't remember her well enough, and that's true of all of my children's young years, but with her it hurts the most because I have this feeling of losing some part of her and wanting to better remember her before she regressed.

Sometimes it comes home to me, the things I expected for her that aren't happening. Today I was visiting my sister, who was lamenting the lack of a cousin to be a playmate for her little girl, and it hurt that Calliope wasn't filling that role. And I see children her age learning to read, and I wonder if Calliope will learn to read. I pick her up from school and see other children excitedly telling their parents about something they did at school that day, and I want Calliope to tell me about her day. And I worry because right now she's a little girl, and she's adorable, but as she grows up, will people be less accepting of her than they are now while she's small and cute? Because even now, I watch her cousins slam the door when she starts to come into a room, because they don't want her messing something up or because they just don't want her around. My own children sometimes struggle. She can be difficult. She has destroyed their things. She throws tantrums. So what will adult-hood be? How much progress will we make?

We had a similar situation with Jasper. He regressed between ages three and four. But it seems he had developed hearing problems, and once we addressed the hearing loss, the pieces of him that had been lost gradually returned. And something in me keeps thinking and hoping that eventually that will happen for Calliope. We have checked into her hearing. We have checked into her vision. The results of those tests haven't been entirely conclusive, as she hasn't been a cooperative test subject, but there has been no obvious and easy fix. And sometimes when I realize Calliope was somewhere around three years old when she regressed, and that now she is seven---that we've now had over twice as much time post regression---it hurts, and my hope of gaining back whatever it was we lost gets dimmer.

I hope I don't sound like I'm not grateful for Calliope. She's given us more than a few scares, and I'm so glad she's here. I love her as she is, but I do want the part of her I feel is lost or hidden back, too. I wonder if I should feel guilty for grieving what was lost in Calliope. It doesn't mean I don't appreciate her. It doesn't mean I don't see what is still wonderful about her. But is it wrong to grieve for what she (or I) lost? I know it isn't really helpful. Mostly, I avoid dwelling on it, because it isn't useful, and it is painful. Mostly, I just enjoy her as she is, and I deal with the difficulties she brings, because she isn't easy; I'd be lying if I pretended parenting Calliope isn't so much more difficult than I expected. (I never expected "poop smearing" to be a regular conversation topic in my home or to have people wearing elf ears and carrying swords look at me like I'm the weirdo as my son carries my screaming, writhing daughter who has full-on lost it across the Renaissance fair where my car is on the other end of the massive park or to tell my kid to please quit trying to sniff my armpits or that sleeping in would still be a foreign concept when my youngest is seven, for example.) But I try to move forward with getting her therapy and getting her help in school to try to help her to achieve and learn. But sometimes I wallow. And then I go find her sleeping in her bed or wherever she happens to be (though usually these moments of grief strike me at night), and I kiss her cheek, and I am so happy that I have her. I'm going to go do that now.