The shopping trip that wasn't

Today, Tony took Janey with him to got to Trader Joe's, with William and my brother-in-law. We all love Trader Joe's, as has Janey in the past. William was excited to get some of his favorite low priced frozen foods, Tony was excited to get the great store brand Swiss Cheese they have, and Joe (my brother-in-law) was excited to get some of their Sicilian wine. And all was jolly until they were about 10 minutes from the store. Janey started saying she wanted to go home, but it was a low level grumble. Then, when they got there and got out, she started The Crying. The crying that has, we now realize, reached a new level of intensity the last few days. Maybe it's an 8 year old thing. She screamed and crying so loudly, so intensely, that Tony experienced my Sears disaster in parking lot form. People staring, EVERYONE in earshot staring. It's that kind of cry. And it was impossible for them to go in the store. Tony offered to stay out with Janey, but Joe was too shaken and William doesn't have his own debit card to pay. And so they left.

William was very, very, very angry about this. I can't totally blame him. It's not the first time his life has been changed by Janey, of course, but lately, it's not just hard to do things if she acts that way, it's impossible. The probably 5 minutes total I was in the Sears were such hell that a whole shopping trip like that would be whatever is way beyond hell. For us, and for everyone else in the store. Janey might very well hurt herself, as she sometimes starts banging her head or biting herself when the fury and sadness completely overcomes her. And so we can't power through this.

And now she is home, fairly happy. And we are at a bit of a loss. One of the main ways I got a little respite was Tony taking Janey grocery shopping. She likes, or liked, to grocery shop. If this new behavior lasts, I can see us much more confined to home. And of course I worry---if she does this at school, I can't imagine how it will work out. I feel worried sometimes we are headed for a new stage of Janey. Or maybe I shouldn't say worried. Often, very tough behavior with her comes before a step ahead, and indeed, she has been saying some good phrases lately, and the toilet training progress is, knock on wood, great. I have no answers, really.

Shopping Hell

Janey has had a tough last few days, including her birthday. There's been periods of time each of the days where she has been crying non-stop, like in the bad old days. I mean completely non-stop hysterical crying, for hours and hours and hours. There are have been periods each day where she was fairly happy, but the crying has been big parts of the days, and it's been awful. She doesn't like to feel that way, and I know she doesn't know why she is crying. She does pathetically sad things to try to comfort herself, like telling herself to take a deep breath, or humming lullabies to herself. It breaks my heart. Today Tony took William to visit colleges, and I decided to do absolutely nothing but try to keep Janey happy and active, and to do whatever she wanted, sort of a second birthday that was just hers (she shares her real one with Freddy). It worked pretty much until 3pm, which has become the Hour of Evil where she starts to lose it every day. I took her to the splash park in the morning, to McDonalds for lunch, we snuggled a lot, I played with her, watched Yo Gabba Gabba with her a lot---and I was hoping it would all break the crying trend. I took her at 3 to Sears to ride the escalator there, the closest one to us. She had been asking and asking for that. Something about the store set her off badly. At the top of the escalator, she started screaming, crying so loudly that literally the whole big store was looking at us. I grabbed a dress I had been wanting to get her, on a huge sale, and ran to the register. Dumb move. As we waited less than 2 minutes for a cashier (you get quick service with a screamer, they opened a new register), the woman behind me in line felt the need to tell me that Janey needed to go home, and then started loudly saying "SHHHH" to her. I felt like punching her, or at least explaining to her we had been in the store literally 3 minutes at that point. But concentrated on just getting out. Then the cashier felt the need to roll her eyes to another cashier and sigh loudly as she waited on us. At that point, I lost it. I am not a yeller. I do anything to avoid seeming rude or being confrontational. But I couldn't stop myself. When I am REALLY upset, something takes over. I said in a very loud voice (maybe yelling) to the cashier "She is autistic. I am shopping as quickly as humanly possible. She needs school clothes just like anyone else, and I do not have any babysitters. Therefore, I must bring her with me. I'm sorry she is bothering you" The cashier, taken aback I am sure, said nothing but a sarcastic "Have a nice day!" as we left, with the eyes of every person in the store on us. If you know me in person, you know this was my nightmare. Literally, one of the worst moments of my life. And you know that when I got to the car, I started doubting myself. Why did I take Janey to the store? Why did I try to buy anything? And then, still mad, I started answering myself. What else am I supposed to do? What I said to the lady was true. Should I just keep Janey at home at all times, to avoid bothering anyone? Isn't that what people used to want people with kids in wheelchairs or kids with Down Syndrome to do? Why doesn't Janey have a right to be in public? Of course her crying is tough. But you would think that people would realize I am doing everything I can to minimize their exposure to it. That sometimes, I have to try anything, and I thought the escalator shopping might work. That there are many kinds of people in this world, and although Janey is loud when she is crying, she isn't a spoiled brat or a mean kid. She is autistic.

Well....that was a long rant. Obviously I'm tired and upset. I know these weeks without school are tough for Janey as well as me. In fact, the day before her birthday, when I asked her to guess what the next day was, trying to hype her up, she said "A school day?" very hopefully. So we will make it through, someone. But I won't forget today anytime soon.

Not letting a jerk ruin a great day

I took Janey to the aquarium today. I would never have had the courage to do so without my friend Maryellen. Janey loves her (and so do I!) and with her help, we had a great day. Janey liked the aquarium a lot! I had a feeling if she would like any museum type place, that would be it, as she loves to look at fish, and has been very, very taken with a Teletubbies segment about feeding penguins. But I've guessed wrong many times in the past. Luckily, I was right this time. Janey loved seeing the penguins, and spent a long, long time at several fish tanks. She was good walking to and from the aquarium, and even good waiting an hour for our train at the station. I was on a high---so happy that I was able to do something that "normal" with her and have it go well.

Then the train ride home. Janey was still happy, but starting to cross over into manic a little. It had been a long day. She was repeating things she heard Maryellen and I say. She got caught up in saying "Don't say THAT!" and then laughing in a fake and loud way, over and over. We were working on calming her down, but she wasn't hugely loud, I didn't think. However, a man about 4 rows ahead of us (on a crowded train, which was in no way quiet otherwise), turned around and said "Could you just keep it quiet back there, please?" in an annoyed and superior way. Maryellen immediately said "She is autistic" and I said "We are doing the best we can". The man said no more, but for me, the damage was done. I wanted to cry my eyes out, and alternatively wanted to go scream at the guy, to let him know how his words had pierced me. I know I shouldn't have let it bother me. He was a jerk, he was somehow annoyed by Janey's tone or pitch or who knows what. He had no idea how hard it is for me to get up the gumption to take her out like that, and how easily someone like him can make it a thousand times harder.

Now we are home, and Janey has lost it---she is screaming, hysterical, out of her wits. I am letting her cry a little, as I think she needs it after holding it in all day. She was probably overstimulated, but I have to count the day as a success.

And I am lucky---lucky that I have rarely had someone be that openly nasty. I can't let my own demons keep me from giving Janey experiences like a trip to the city. I don't want to be the center of attention. I don't want to be seen in a negative light. But I'm not Janey, and she had no idea what happened. She hopefully will remember today as it should be remembered---a great day.

Waited a day

I waited a day to write about something that happened yesterday, until I'd had a chance to calm down. I have now, and it's not as fresh and hurtful, but still very much so.

Janey had an appointment to see the psychiatrist that prescribed the medication for her a few months ago, to check on her. We went in by train, which is a whole story in itself for another time. The appointment was in the Internal Medicine department, as the psychiatrist is not at that office all the time. So we went in there to wait after checking in at the main desk. Janey was crying. She is scared of doctor's offices or anything that looks like one. I was holding her and trying to comfort her. She was a little loud, but in my eyes, no terribly so. It had probably been only 3 to 4 minutes when one of the three receptionist there came over to me and said (I'm trying to recall the exact words) "You'll have to wait in a different place. We have patients here and they can't have that kind of noise---she's too loud. She can't be here" It was one of the very, very rare instances I was so upset that I didn't use my internal censor that usually keeps me from saying close to what I think. I said "SHE is a patient here. She is here to see a psychiatrist BECAUSE of her anxiety and crying. There is no other place for me to wait. She is severely autistic, and I can't totally control her crying". Or mine either---by that point I was crying hard. The woman and the other two receptions jumped all over themselves to say they were sorry. I am assuming they thought that I was the patient, and I had just brought along my bratty kids for fun. I really hope they didn't know JANEY was there to see a psychiatrist. And even if they did, I can't possibly imagine how her crying would disturb patients, who were behind heavy doors and in their own rooms. And even if they did want her gone, they could have handled it a million better ways, like saying "Poor thing, she's having a hard time. Can I find you a place to wait where she would be happier?" What they did do is take us to a couple chairs far, far into the bowels of Internal Medicine, like a tiny waiting room for the psychiatrist. I sat there and cried and cried. I couldn't stop. I am sure I looked crazy, but I've always felt like a doctor's office was one place where I would be exempt from the stares, the angry looks, the judgements that keep parents of autistic kids from leaving the house much. I guess I was wrong.

I am trying to figure out if I should write a letter or make a call about this. Everyone says I should, but honestly, I don't think it would make much of a difference. It's how life is. What made me cry, I think, is realizing this is my life from now on, and worse, Janey's life. She is going to live her whole life in a world that has little understanding of people with mental illness or retardation. Maybe some parents would see that as an incentive to take on that world, but that's not me, at least not directly. I will protect her, keep her as happy as I can, but I'm not going to fix the world.