Janey is happy right now, watching TV and cheerful. Which is amazing, considering our ride home from afterschool today. The great high school student that often is with Janey at afterschool reported she had a good day, but started crying just before I got there, which is not uncommon. I think she knows when it's around time for me to be there, and if I'm not there right when her mind tells her I should be, she freaks out. She was crying hysterically all the way to the car. I told her I had chips for her, which made her settle for a minute, until she saw they were cheapo Lays BBQ chips, not the Pringles Salt and Vinegar that I am SUPPOSED to have for the ride home. She pushed the chips away and screamed "CHIPS PLEASE!" It wasn't really the chips, I know, but that didn't help. She screamed the first 10 minutes in the car at an unbelievable volume and in an unbelievable tone. I was just barely able to drive. She stayed in her seat belt, but writhed around so much I thought of a new fear, that she could unbuckle and jump into the front and cause an accident. I made a decision---we would stop at the CVS for the chips she wanted.
I tried to use it as a bribe. I told Janey "They don't allow loud screaming at the CVS. You need to take a deep breath and calm down if you want to get chips" She tried. She really tried, but there was just no calming down. She was too far gone. I drove into the CVS parking lot and sat there a minute, trying to decide what to do. Janey would cause a scene. There was no avoiding it. I hate being in a scene, hate being the center of attention. But I needed to get home. I knew the chips would buy me 20 minutes of quiet driving, not fearing for my life and hers. So I took the deep breath instead and took her into the store.
It was as much hell as I thought it would be. Janey was screaming the unearthly scream the whole time. To add a little more of a bizarre twist, she also occasionally screamed out a phrase I have no idea where she learned "Ashes to Ashes! Dust to Dust!" I haven't taken her to any funerals lately, and I can't imagine any of her kids' videos feature that exact phrase, but who knows? It added just the little touch of seeming possessed that made the whole thing that much more fun. Every eye on the crowded store was on us.
I decided somehow, through the screaming and the stares, to just pretend Janey and I were alone in the world, and to do whatever I could to get us through the store and keep her calm. I held her hand, talked to her in a low voice saying things like "I know how scary it is to feel the way you do. Mama loves you. You are being a good girl. Let's get the chips. Let's get in line. I am right here with you" I was far more patient and loving sounding than I felt right then, but I figured I could control my part of the show, and the gawkers didn't need to see a crazed mother too. I was hoping against hope someone would take pity and let us go ahead of them in line, but no such luck. The woman ahead of me seemed to go as slowly as she possibly could, while repeatedly glaring at me to let me know how much she was being disturbed. When I finally got to the counter, the cashier asked for my CVS card, and I said as cheerily as I could "I have one, but I can't get it right now!" Yeah---because if I started searching for it, my daughter would escape and run screaming around your store, lady. I handed her cash and got out of there.
In the car, as I expected, Janey ate the chips and I made it home. She had a few more crying spells, but overall, she's over it.
Now, did I do the right thing? I don't know. To an outsider, it might look like I was giving in to Janey. But I don't think I was. She was upset, but not really about the chips. The chips were just a part of the routine that wasn't met, and a tool to calm her down. I needed to get home safely, and that wasn't going to happen unless I did something, so I did.
I can understand why people stare at Janey when she is acting the way she does. I can't really blame them. But I wish they would just catch my eye and smile, or at least not be quite so open with the staring. I would think they would realize that I don't enjoy going in the store and disturbing their evenings. I'd rather, quite frankly, do almost anything else on earth. But Janey is a human being, one who, despite her sometimes very tough behavior, is part of the world, the community. Figuring out how to make that work is not easy sometimes.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
12 comments:
2 thoughts: maybe they stare because she looks more "normal" than you perceive? And they are just thinking "oh what a bad girl! And look at her mom not disciplining her"
The "ashes to ashes": could she have somehow watched or heard something that frightened her? A scary movie etc. Could another child in school have told her something scary? Something that disturbed her so much that she's been unsettled? Obviously she didn't make it up herself. I'd be curious where she heard it
Hugs, as always.
It very well could be from a movie. She got into watching a few Disney movies, which we have decided to "lose". I wouldn't be surprised if that line was in one of them and I've missed it! It's possible too she heard it in music, as my older son is a huge fan of metal style music, which certainly says things like that, but usually the lyrics are pretty hard to understand! I don't think she'd understand anything someone at school told her enough to be upset by it, but I've been wrong about that before. I kind of hope you are right about the first thought---that she someone just looked like a normal kid throwing a tantrum and me like a mother giving in to a bratty girl! Probably not, though. When she was younger, that was more likely to happen, but now that she looks her age or a little older, her speech and general demeanor are enough so that most everyone picks up that she has some kind of special needs. Thanks as always for the thoughts and hugs---back at you!
You did the right thing. She needed the chips to survive her crisis. I don't have sympathy for overtly rude, staring people any longer. Yes, we may be ruining your lovely trip to CVS but at least pretend to show some compassion for us!
I am very glad that the chips helped calm her down and got you home safely.
Thanks, Michelle. It truly means a lot to me to hear that tonight. You cracked me up with the "lovely trip to CVS". That is what I was thinking some---how can she be upsetting you that much when what are doing is shopping at a stupid drug store? It's not like I took her to eat at some fancy restaurant and ruined your meal. Even pretend compassion would have meant the world to me in there. It's good to talk to people that get it---I'd give her a case of chips a day if it got us through it all, so one can of Pringles not to die in a fiery car crash was a small price to pay.
You absolutely did the right thing! It makes me SO angry that in this day, when there is so much more awareness of autism, mental health issues, etc etc., that people don't just withhold judgment. We never, ever know the entire story. I wish people had more compassion.
You most definitely made the right choice. And it warmed my heart the way you were compassionate with Janey (even when you didn't necessarily feel like being that way) among all of the harshness you encountered from other shoppers. It's those times of immeasurable patience we find we have where we really are just naturally digging deep - why? Because we have to - because we will do anything for our children. There is just no other choice. As for the looking "normal" I think about that all the time with Willow. It's so strange, dealing with this condition. If Janey were missing a leg no one would think twice (well, actually I take that back, some people would...). But because Janey looks the way she does (and Willow & Sophie etc etc) people look and think, what's wrong with them? Some people are so clouded they don't understand that just because you can't see it does not mean it's not there. If I had a nickel for every time someone has said, she looks fine... And Willow is not even 3! I'll repeat it again, you made the right choice!! Big hugs from us too :)
Well, I solved the Ashes to Ashes mystery. It's from the song Family, from James and the Giant Peach, which is on one of Janey's sing-a-long videos. It's a creepy song, but I wouldn't have guessed it had those particular lines until I watched closely with her. Thanks, Becca and Tea Mommy, for the additional votes that I did the right thing! The issue of our girls looking so normal is very tough. I think that does get easier as they get bigger. Janey can't "pass" for normal any more most of the time. An eight year old acting as she does, unless someone is COMPLETELY unaware of mental health issues (and there are a lot of people like that, I guess, as you said, Becca!), they can see she has something going on. But I think their looks give away often something they wouldn't come right out and say---that they think that although she obviously has issues, they feel I should be able to either control her completely or just not take her out in public. I hope I have NEVER given anyone that impression when their child was acting unusually! But I imagine I have, in my younger days. I hope I never do again.
You did the right thing. Even without the screaming, today's driving conditions were difficult enough. If it makes you feel any better, I've had dirty looks in that cvs plenty. I used to live right by there and couldn't stand running in with my kids.
That's good to hear, Amy---if your kids got stares, any kids must get stares! It seems like it turns into a whole different place once the sun goes down---it's always been one of the Janey-friendly places during the day.
Absolutely did the right thing and many hugs to you - it's so hard to be composed *all* the time, which is what our kids expect, because they don't understand that we can fall apart. And I've stopped giving a squirrel's butt about what other people think when they see me with my children. "Walk a mile in my shoes…" right? I used to see cards that could be distributed to snooping, unsympathetic strangers. On one side it said, "My child is on the autism spectrum. What's your issue?" On the flip side it had a definition of ASD, including some of the behavior challenges. I thought that was pretty brilliant to just hand to someone who is standing there staring or just being rude.
I was wondering if a couple things could help - not trying to be a busy-body, but sometimes they helped for my girl when she was younger. I would take pictures of her favorite things on my phone. If she was upset about something, generally my girl would shut down parts of herself - sometimes it was her speech or her sight. If she couldn't hear me tell her what we were doing next, she could see it from the picture on the phone. Maybe taking a picture of home, her favorite food/drink, or a calming activity could help her identify what you are trying to do next? The next time you can tell she is beginning to get upset, perhaps you could show her a picture instead?
I had a lot of luck with headphones too. We used just some that were recommended by her OT at the time and they were about $30. I encouraged my daughter to use them if she felt like there was too much stimulation, since she told me it's hard to close your eyes, plug your ears and walk at the same time :). Would Janey be game for that?
Those are great ideas! I think it's so true that when our kids are overwhelmed, they shut down senses. With Janey, I think it's usually sight. She is not very visual at the best of times (I mean, she can see well, but she is much more auditory in how she perceives the world). One thing I do a lot when she is just crazed is quickly make up a song that addresses the situation, and that seems to get through to her when nothing else will. I need to try headphones more! I think I need to find just the right ones for her, that don't bug her ears and are noise-blocking. I can picture they might work better with just white noise sometimes than music, because since Janey is so tuned into music, sometimes when she's upset, she gets obsessed with whatever song she's hearing and starts obsessively singing a line or two from it, and can't stop. Which kind of negates my idea of making up the songs, but when she is almost totally lost, it's sometimes better to have her repeating a song lyric like "Please don't cry in the car!" than just randomly screaming! Thanks so much for the support and ideas!
Headphones have been the one thing that has had the biggest impact on Lindsey's behavior, EVER. They are an inexpensive pair ($17) from Lowe's made for muffling loud noises. She wears them all the time even in bed. We keep extras on hand at home and school.
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