Friday, August 31, 2012

First time saying "towel"

Janey has always called towels "scarves". If she's in the bath and wants to get out, she says "You want a scarf!" The two have similarities, I guess, as they both get wrapped around you and keep you warm, but it seems like she's encountered towels much more in her life than scarves, and it always is interesting to me to try to figure out how she picks what word to use. Today, though, when she wanted to get out of the bath, she said "We'll get a towel, to wipe your nose" A lot about that is typical of Janey's speech. She often, but not always, reverses pronouns, a very common trait in autistic speech. She usually speaks in phrases, which often are echoed from ones she has heard once or twice. I can't imagine when we used a towel to wipe her nose, and it's a little gross to think of, but we must have said that. And I'm thinking she often gives a reason in the second part of the sentence, which I realize I usually do, and she's probably copying from me. I try to kind of "add value" to much of what I say to her, to give her more words to use. For example, I'll say "Let's get on your coat, to get ready for school" or "Put on your shoes, so we can go in the car" So in saying towel for the first time I can remember, Janey either copied a phrase she heard at some point, or created her own sentence using a set structure. If no-one had ever talked about wiping their nose in connection with towels, that's kind of more interesting. She might not have been able to think of how to describe what towels do---dry me off? Warm me up? but she could think of what PAPER towels sometimes serve to do in our house, as we don't usually buy tissues. She hasn't said paper towels either, but the word is the same.

The language part of Janey fascinates me. It's very unlike typical language. It seems like the language part of her brain just doesn't work in a typical way, and she has to use other skills to create language. She is extremely good at remembering exact words of songs, and I feel like she uses that for language---"Let me pull up a time I heard the word I want to say, and use that lyric to make them understand" And the fact that after all these years, she used "towel" for the first time makes me hopeful she is still progressing in vocabulary. I wish I knew better how to use Janey's strengths to help her do so.

Wednesday, August 29, 2012

Back to Janey

I had a 4 night getaway in Maine, thanks to my parents and my friend Julie. It was wonderful---very relaxing. I missed everyone, but they seemed to do well without me. Janey had been over her crying times for several days, and she stayed happy and slept pretty well. I told her I was going, and talked a lot about how I'd come back, but I never know what she understands. I talked to her on the phone, but I never get much response from that. Nor did I when I actually got back. I have to admit it's a little sad to me. Janey did not show any sign of any emotion when she saw me. She looked completely uninterested. I know that can be that she was overwhelmed and just shut down, but I think I know that look, and it wasn't the one. Either I had prepared her very well and Tony and the boys had taken very good care of her, which was the case, or she really wasn't too torn up about me being gone. Which of course I wouldn't want her to be, but I'm human. It would have felt good to have her run and hug me and get excited. And she DOES do that with some people. She's done it at school quite a few times when seeing teachers or others she hasn't seen in a while, especially I was told when Donna, her PT, came back after being out for a while. She gets thrilled every time she sees my friend Maryellen. But for me, not so much. And I am fine with that. I guess that's the goal of attachment parenting, which isn't quite my philosophy, but which I agree with a lot of. She is securely attached and she knows I'm coming back. I'm rambling a bit.

Being away sometimes gives me a fresh perspective on Janey. This time, it make me think over again about how limited her ability to communicate is, and how I think a lot of her frustration is when she can't figure out how to ask for what she really wants. She asks for the closest equivalent she can say, and then isn't happy when she gets it, because it's not really what she wants. For example, she will often say "I want go in the car" I am pretty sure in her mind she has a specific destination, but she can't think of the words to ask. When she said that today, I tried listing everyplace I could think of she might want to go, and even that didn't work. She finally said "I want go in the car TO MAMA'S HOUSE" and when I said "We are already here!" she got upset. I was wondering (hoping, maybe) it was a roundabout way of telling me that when I was gone, she had wanted to go to where I was. But she's given that answer to where she wants to go a lot of times in the past, and I think more it means she wants to go in the car that is AT Mama's house, to go elsewhere. She also often says lately "I want water" which can mean anything from a bath to a drink to the wading pool to the beach to playing in the sink to washing her hands.

Anyway, in returning, I felt extremely grateful to Tony. He kept Janey happy, cleaned the house some, cleaned my car, had a special meal ready for me....I am very lucky, for friends and family that give me a chance to recharge and for a family I love to come home to.

Wednesday, August 22, 2012

An hour's worth of Janey thoughts

1. We are in the car, driving to a Barnes and Noble about 20 minutes away, to get a book for William. I put on my iPod to my big list of assorted songs, and Janey loves that. We have it down---if she likes a song, I repeat it until she stops asking. Today's repeats are "Leaving on a Jet Plane" and "Baby's Got Her Blue Jeans On". It strike me as it has many times that when we listen to music together in the car, we are both happy on the same level. There's no autism between us. We both love to hear what song comes on next, to enjoy a catchy tune. She's my dream music-listening friend.

2. At the Barnes and Noble. I've found William's book and we head to the kids' section, to see if there's a Yo Gabba Gabba book. There isn't, but Janey is happy there for a while. A little girl is dancing on the small stage there, and Janey gets up and dances with her. The girl looks happy, but her mother I think quickly sizes up that Janey isn't "right" and calls the girl away. Another mother is reading to her obviously very bright little toddler. As Janey makes her sounds and flaps her hands, she gathers the boy in tight and then leaves the area. I think how they are reacts to Janey like many of us react to being around someone obviously mentally ill. We are too polite to stare or comment, but we don't leave ourselves open to somehow be caught up in the scene. Although we know logically it's not catching, a part of us still acts like it is. It's very isolating. And I can't help but feel hurt.

3. A few minutes later. Janey runs from me, holding a train from the train table. I yell "JANEY! STOP!" but she doesn't. She runs across the store, luckily not out into the connected mall. She hits a dead end, and I catch her, we walk over to put the train back, and I lecture her and tell her we have to leave now because she ran away. She has her "wild" look on, and is laughing a lot. I think how she probably enjoys the few seconds of freedom, the once in a while being out there without holding a grown-up's hand. And how it can't happen. And what that all means.

4. The cashier smiles at Janey as we buy the book, and says "You look very happy today!" I think about how much little things like that mean to me now, how much I appreciate kind words and friendly smiles.

5. We are in the car home. I think "pretty successful trip", my mind editing out the running away, the parents acting protective, all that. The bar is fairly low for successful trips. I think then about my daydream daughter, the one I had mentally before Janey. We would have looked at all the books, talked about what she wanted to read next, bargained over how many she could buy, debated library vs. bookstore. In short, she would have been a little me. And of course, even if Janey wasn't Janey, that was just a dream. But then, as we listened to more music, I thought about how my daydream daughter and I had never listened to music with the intensity Janey does. I told myself I was getting all "Welcome to Holland", and I laughed out loud. And Janey laughed too.

Monday, August 20, 2012

What a difference a few days makes

Janey had a very tough stretch around her birthday. From about Tuesday to Saturday, much of each day was taken up by hysterical crying. It was awful, for her and for us. We really had and have no idea what was wrong. This kind of stretch seems to happen about three or four times a year. Thankfully, and knock on wood, the length of the stretch seems to be getting gradually shorter over time. But it's still almost impossible while it lasts. And then Sunday, Janey woke up happy. And she's been happy, most of the time, today also. I hope it lasts. It tends to, once she gets out of the sad stretch. She's not manically happy, just regular cheerfully happy.

And of course I would guess I'm not the only one thinking this sounds a lot like manic-depression, or bi-polar disorder, or whatever it is called now. Whatever it is called, I've read it is no longer diagnosed in children. And I guess I'm kind of glad of that, in a way. I don't need any more labels for Janey. I hope by the time she is an adult, she doesn't get these spells. But the fact remains that something sometimes makes her very sad for a while, and something sometimes makes her manically laugh all day and be very wound up and wild for a while. Whatever it is, it's enough of a pattern over the last 5 years so we can kind of recognize the moods coming on and going away.

When Janey gets happy after being sad, it's wonderful. We appreciate her all the more. Tony and I look at each other many times a day and we are both thinking the same thing---if she could be happy, nothing else matters---the autism, the retardation, the lack of skills like toilet training---none of it. She can be the most delightful child on earth. Tonight she was thrilled to "help" Tony with laundry, thrilled to eat a supper of hot dogs and cabbage slaw, thrilled to watch a Disney video WITHOUT singing that she had never seen before. Earlier today, she said to Tony "I want soda!" and he said "I want soda too" and then just to be funny, "I want soda three" and she said without missing a beat "I want soda four"! This afternoon, she said "I want to go to Va-Vere Beach, but that's silly. Maybe the weekend" I've never heard her say "weekend" before. I know she was quoting me, but it was still great to hear.

I wonder all the time what is in Janey's head. What drives her moods? What does she think about? How can I help make sense of the world for her? I just don't know. I'm going to keep trying to figure out, though.

Sunday, August 19, 2012

Life without a handbook

I'm a believer in handbooks. I like to read what others advice. I am not one to jump into new things without studying them first. A trip for which I'm prepared is much more enjoyable to me than one I just happen into. So when I had kids, I read everything I could get my hands on about pregnancy, childbirth and then raising them.

It was not long at all into my first pregnancy that the books began to fail me. Although I was reading over and over how very rare pregnancy complications are, my body and my doctors were telling me otherwise. I read about the importance of exercise during pregnancy. My doctors told me at first to stay off my feet as much as possible, and then to stay in bed all the time. When William was born two months prematurely, it again threw off every book. I tried adding two months to every landmark he was supposed to meet, and still, he seemed stubbornly unable to stay between the navigational beacons. He sat and walked far later than he was supposed to, and he started saying words far, far before he was supposed to. I brushed off his clear "Daddy" when he said it at 8 months, which was 6 months corrected, until I realized he said it whenever the phone rang, as it was usually Tony calling. He just kept adding words from there, and not sitting up, and never liking the foods he was supposed to, and generally doing everything with total disregard for any guidelines.

But still---I read the books, although I was starting to suspect they didn't know all they thought they did. Freddy barely talked at 2 years. But somehow, I knew he was going to talk just fine when he was ready. I didn't worry, and I like to worry beyond almost anyone. Now, I doubt there are many people on earth as good at talking as my Fred. He's thinking of a career as an announcer, and has already gotten some offers along that line.

And then Janey. By that point, I had pretty much realized that either the handbooks didn't know much, or I just had a knack for raising kids who liked to confound me.

However, with the last few incidents of store-crying, I decided there must be something out there that could help me. I went two different routes. I looked up store tantrum advice for toddlers, and I looked for store crying advice for autistic kids.

Well, you can guess what I have to say about that. The central theme of everything I saw was explaining to your children. Evidently, if I told Janey what to expect in the store, stayed calm when she freaked out, and offered her a treat if she could keep her cool, she'd be just fine. There's a few problems with that. Janey probably understands more than we think, but she in no way understands enough to have a store experience explained to her. And the places she has freaked out are not new places, they are places she's been other times without an issue. She is not patient. She can't wait ten seconds when she wants something without breaking down. I can just picture how it would go over if I told her "don't cry or tantrum for the half hour we are in this store, and I will get you chips" She'd hear one word clearly---chips. And want them that second. And cry all the harder without them. As for me staying calm---I try very hard to do that. I might be able to, if I am in a store absolutely alone. But with every single eye staring at me, and some people feeling they must offer advice or show their disgust---well, I'd like to see anyone stay calm.

The autism-specific advice all tended toward kids with much more verbal ability and level of understanding than Janey. I can understand that. If I felt like writing some autism advice, it would be a lot easier to write it for higher functioning kids. I'm starting to suspect the truth. There is no advice that really works consistently when dealing with lower functioning kids with autism. There are stop-gap measures, like hugging her or giving her food instantly, and there are very long term measures, like having her learn more language through school and ABA. But the middle-term measures that would get us through a store trip, or a middle of the night scream---they don't exist.

And so I'm left living without a handbook. Sometimes I think I'd like to try to write one, but then I realize anything that might work for Janey might not work for any other kid "like" Janey. I put like in quotations as there is no other kid like Janey. That is true for all kids, but like how Orwell said some animals are more equal than others, some kids are more unique than others. If you are a fellow member of the club of parents of low-functioning autistic kids, you can wear that as a badge of pride. You've got yourself a kid that you are the expert on. No-one else really gets it. Whatever you are doing for your kid is most likely better already than any expert could teach you. It's taken me a lot of years of parenting to accept that I'm the expert on my own kids.

Saturday, August 18, 2012

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.

Friday, August 17, 2012

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.

Thursday, August 16, 2012

Happy Birthday to my 8 year old

Janey is eight today. Eight years ago, a scary, scary pregnancy ended in a scary birth, and I was able to hold my surprisingly blond little girl for the first time. The nurse remarked she hadn't seen such an alert and engaged baby in a long time. She looked at me intently while she nursed so well, that first half hour. I think that half hour after her birth was one of the last times I had no worries at all about my sweet girl.

Today, where is Janey? In some ways, this past year has been one of progress. Although I'm always terrified of a jinx, she is doing far better with toilet training than I would have hoped even a few months ago. When she's at home, able to get her clothes off easily and near a potty, she's getting close to probably 80% success. That is wonderful. She had a very good year at school. Academically, she learned more than all the others years of her life combined. She can write a J, she can identify lots of letters, she knows a few of her colors down flat, she can usually pick out her name from other names...having a great ABA specialist and great teachers was, well, great. But other areas are not as encouraging. Last night, she woke at 1am to cry for literally 4 hours straight. It's been a while since we've had a night that bad. We've been in a crying spell for a few days now. She still rarely answers us. This year has seen the start of Janey The Menace, who left unsupervised for seconds will always, always find a way to do something messy and destructive. Twice lately, she attempted to run away from me in parking lots. In short, Janey is still quite severely autistic. And she, barring miracles, always will be. My beautiful, amazing girl, is, if you put it in harsh terms, a girl with low-functioning autism and retardation.

However, sometimes we have to just put that all aside and remember that it's close to a miracle that she's here at all. My pregnancy and childbirth left many opportunities for that not to be the case. Even the fact she got started was a piece of luck. Both the boys took a little help from fertility medication. She was just given to us, a present. Life with her is not easy. I don't think it ever will be. But there are those moments when Tony and I look at her, when she is smiling and happy and funny and interesting and beautiful, and shake our heads that we got so lucky.

Wednesday, August 15, 2012

The crying white monster on Yo Gabba Gabba

                                                      A NOTE!
For some reason, I've figured out that these pictures come up very high in the Google Images search for pictures of Yo Gabba Gabba.  I hope if you've found them that way, you don't mind that this isn't really a Yo Gabba Gabba blog!  It's a blog about my daughter with autism.  If you'd like to learn more about life with a child with autism, this post----  link --- is a bit of a sum-up I posted recently. Thanks!






Janey's latest passion is Yo Gabba Gabba. For the uninitiated, Yo Gabba Gabba is one seriously weird TV show. It's the kind of TV show I could picture being watched on college campuses after, well, illegal mind altering. It is about a guy, DJ Lance Rock, and his gang of toys that come to life, assorted odd little guys. There's lots of music by alternative type bands, lots of far out animation and weird cut scenes. It's the kind of show you watch the first time and think "what the heck?" But after time, it grows on you.

My favorite part of the show is the very, very simple social lessons it teaches. I think someone involved in the show must have a child with autism, or understand autistic kids, because the lessons are taught in the way we have to teach Janey. No long fables, no coming to your own conclusions, no vagueness. They are saying like "Don't Bite Your Friends", "Don't Hit Your Friends", "Don't Say Mean Things to Our Friends", etc. They are sung over and over, and illustrated with very simple little scenes---one of the monsters gets over-excited and bites his friend, one of the guys hits the other and so on.

And there's an extremely weird character that's on a few shows that truly impresses me, in an off-beat way. It's a crying monster, Gooble. The monster is tall and white and obviously very sad. The other characters do ask why he cries all the time, but DJ Lance Rock pretty much tells them---we don't know, but we will still be nice to him. He's our friend.

It struck me seeing this how very, very rare it is on kids shows to see an emotionally different child. Kids shows are chock full of lessons about not treating people who LOOK different than us differently. Any kid watching TV much at all will learn that lesson a thousand times over. We learn also about kids in wheelchairs, kids that can't see or can't hear, and kids that talk different languages. But when, ever, do we learn that some kids ACT differently? And act differently FULL TIME, not just shows about kids having a bad day and crying and then it gets figured out and fixed? I don't think much, ever.

Janey cries a lot. There are days she cries most all day. She is a lot like Gooble that way. We usually don't know why she is crying. Kids have asked me that, and I don't have an answer, except just that Janey is that way, sometimes. Other days, Janey laughs all day with no reason, or sings the same song over and over, or looks blankly into space, or plays with her hands. This isn't an easy, 20 minute show, problem. It's not that someone took away her toy and she is sad about it, or that she is not feeling good. The emotional displays are part of her. So it amazed me, thrilled me, that a show actually seemed to get that kids need to learn that. It's a great, great lesson. We are all different, not just physically or in terms of abilities, but in terms of how we act. I'd love to see more kids TV that addresses that. If the rise of autism is true, I would bet it's a huge growth market for TV.

Meanwhile, we'll be enjoying the inspired weirdness of Gooble and the rest of the gang.

Tuesday, August 14, 2012

A Day at the Beach

We went to the beach yesterday, and had a great day, overall. It's wonderful when we can enjoy ourselves while Janey is too.

I worked a lot on something they have been doing with Janey at school too---teaching her to come back when called. I let her run a bit on the beach, not far, but a little ways, because of the nice long visibility. Then I would yell out "Come back, Janey!" and nine times out of ten, she did! I gave her a high five when she came back, and said something like "See? If you come back nicely, you can run around more!" She seemed to get it. However, the one time out of 10 she doesn't come back is the killer, and in most places, there's a lot less visibility and a lot more things she can get into than at the beach. But it's a start.

Janey loves the water and the sand. She is fearless with waves---they wash right over her head and she just laughs. When we wanted to sit on the beach blanket for a while, she just sat sifting sand in her hands, mostly.

The ride to the beach on the subway was a little tougher. Janey hasn't been on the subway much, and the noises bothered her. It was interesting and a little sad watching how hard she tried to keep it together, but after a few stops, she couldn't. I talked to her about the noises, how they were normal and just the train moving, and she did calm down some after a while, but with some loud crying and screaming first.

When we got to the beach stop, she got upset again, and actually told me why! She kept saying "This is NOT Ve-vere Beach!" "I want to go to the beach!" The other times in the last few years we have taken her, it's been by car, and climbing stairs out of a subway didn't make it seem like we were going to the right place. I reassured her we would see the beach very soon, and when we did, she was fine.

My friend Maryellen and her daughter went with the boys and me for the trip, and that was perfect, as there was a variety of eyes to be on Janey if mine weren't for a minute, but no-one had full charge of Janey every single minute. If someone does, it's impossible for them to have fun and relax, but if I have primary charge but know I can get a break when I need one, it's great. I can enjoy the time with Janey, playing in the waves, digging in the sand and just watching her enjoy herself.

I guess my conclusion here is that it IS possible to have enjoyable days out with Janey. They have to be doing something she likes, there needs to be a big ratio of potential caregivers to Janey, you have to be prepared for meltdowns now and then, but although that sounds like a lot, it didn't feel like it. It felt like a nice, relaxing day, something I need to figure out a way to have more of.

Friday, August 10, 2012

Just a picture, pretty much!

Janey about to get the car for summer school. She is looking older to me lately. She'll be 8 in six days.

Thursday, August 9, 2012

The fun parts

Lest Janey's recent mischief-filled days overshadow the fun that is Janey, here's a few of the cool moments from recent times----

Janey's enthusiasm for going places---any places pretty much. Last night we had to go out in the evening to pick up the boys from a teen night at a museum. Janey saw it was getting dark out and we were getting her ready to go out, and she was overcome with delight. A car ride? At night? It was like we'd given her a million dollars.

Her growing abilities to figure out electronic devices. The other day, I heard music coming from the iPad that I didn't recognize. I watched Janey playing, and saw she had somehow figured out how to go to a game I play and click a long series of buttons to get to a place where you could watch preview videos for other games, and was enjoying some kind of Barbie Fashion video. I was amazed. She can also now turn on the TV, go to Netflix, pick a show and pick an episode. This is the girl that the technology person for the Boston Public Schools said would "maybe" be able to operate a one button speech device.

Her dancing. She has started watching "Yo Gabba Gabba", which is a weird but dance-intensive show. She follows the moves shown closely, and imitates them very well.

Her ever-evolving tastes in music. She now stops me often when I play songs in the car and says "I like that! I want...(name of song)" Yesterday it was "Hey Nineteen", a song I love, and we listened to it happily together 4 times. Her tastes are pretty eclectic, though---the other day it was "Phantom 309", a creepy ghost story trucker song done by Red Sovine.

Her ability to stay on topic, but mix it up. This mostly relates to her new love of getting Happy Meals at McDonalds or Burger King. When she wants one, she thinks of about a hundred ways to ask for one, as if we just aren't getting her the first time "I want Old McDonald!" "I want fries OR nuggets!" "I want go to the drive-through" "Old McDonald had a farm, and on that farm he had some CHICKENS!" and of course the old faithful "I want McDonalds NOW NOW NOW NOW NOW" She doesn't seem to get that discouraged if we say no repeatedly---that's part of the fun of the hunt for her.

Her growing relationship with her brothers. She puts on a different Janey when she is with them---a pesty little sister Janey. The other day in the car, she and Freddy were exchanging pokes and nasty looks and yells---something I would be tired of if it had happened for years now, but it's new, at least having her an active participant and seeming to enjoy the game.

There's many more. I get so tired and discouraged some days I think I portray Janey in too negative a light. There are many times a day she delights us---sometimes through our tears of frustration, but still, she is amazing in a lot of ways.

Wednesday, August 8, 2012

What to do, what to do...

I mean the title in two ways. First, summer school will be over Friday. I need to keep Janey busy and out of trouble for about a month until school starts. Literally, I need to figure out what to do with her, how to keep her happy and give her a good summer while also staying sane and keeping her safe. The options are fairly limited, and part of that is the other "what to do"---how Janey has been stepping up her game in terms of being naughty. I had a good talk with her great summer school teacher and great ABA specialist this morning. I told them about my tough night with Janey (more on that later) and they told me about some of her antics at school. The big one is the playground there. They sometimes go to a bigger playground down the street, but sometimes to the smaller school one. Janey likes the bigger one, and when they go to the smaller one, she is constantly on alert for ways to try to sneak out and go to the bigger one. The other day, she was watching the gate, and waited until it was opened by a teacher, looked around and saw that the figures of authority were across the playground, and made a run for it. She didn't make it, as they, like us, are always, always on alert for Janey, but they noticed how she is getting better at planning and more determined to get her way.

At home, it's a battle without end to keep her from destroying the house. The worst time for me is the time between when we get home from school and when Tony gets home, especially days the boys aren't here. That's about 2 hours, from 3-5. Last night, it felt like 200 hours or 2000. Janey had several goals. She wanted to get the Febreeze down from the top of the fridge and spray it around, she wanted to have some pepperoni, she wanted to run water in the bathroom sink until it overflowed, she wanted to throw crackers on the ground. Literally every time I was more than a few feet from her, she did something toward her goals---pushed a chair over to try to climb and get the Febreeze, worked on figuring out how to open our new fridge belt to look for pepperoni (which we were out of), run to the bathroom and turn on the water full blast, ask me for crackers, promise to eat them nicely, then toss them everywhere, and when told to pick them up, pretend to pick them up while actually stomping on all of them. I was at my wit's end.

And I truly don't know what to do to stop all this. I go down my list of ideas. Time out is useless, although I still try it. Yelling does less than no good. I try to "identify the antecedent" which is the behavioral approach, and it's pretty easy to identify---she wants what she wants. It's often a sensory thing, and I try hard to give her alternatives. The house is full of sensory toys, at one point yesterday I gave her a bath to let her play with water, she is always welcome to play outside in the wading pool, we have spray bottles with water I let her use in the kitchen or bathroom---but she doesn't accept substitutes. She doesn't care if I don't want her doing what she is doing. That makes little to no difference to her.

And taking her places, like playgrounds or splash parks, is terrifying. She does not stay with me. She runs, and I am increasingly unable to run as fast as she can. I have asthma, and I am 46 and not in Olympic shape. She is almost 8 and very, very strong and athletic. I can't pick her up any more.

I feel like I'm writing this post too often. But it's all that's on my mind lately. I do hope this stage passes. Meanwhile, I have a month to fill up. Somehow.

Sunday, August 5, 2012

Terrible Twos? Terrible Eights?

It's a little hard to describe how Janey has been lately. If I had to pick one word, it would probably be "trying". She has been very trying. But if I had a few words, I'd try to capture the good parts too---funny, alert, connected. And a few more not positive ones---naughty, defiant, loud, angry.

It feels a lot like what we have been told the terrible twos are. Neither William nor Freddy were particularly terrible at 2. William was tougher around 4, Freddy as a baby (and some could say, in some parts of his teen years, but that's hitting a little close to home, sorry, Fred!) But she is acting like I've heard the terrible 2s described. Everything is a big deal. Lots of NO NO NO, lots of loud demands, lots of just making herself heard. It's great, in a few ways, but as many things with Janey, the tough parts are magnified. Part of this is just she's a lot bigger than a 2 year old. I can't lift her any more. She is rapidly gaining on me in strength, and getting taller all the time. You can put things out of a 2 year old's reach, but not an almost 8 year old.

A few scenes---Janey wanting bacon. She asks once a little nicely, but her patience is gone after that. She gets right in Tony's face and screams "I WANT BACON NOW!" shaking her finger. Needless to say she didn't get any right then, but we almost had to laugh, that first time. It's not quite as funny now that she is using that tone for almost anything she wants. Later--Janey is wet. She is doing better with the potty, but far from perfect, but finally, it bothers her to be wet. We are in the drug store, and she wants to be changed. RIGHT NOW. She screams at the top of her lungs "I WANT PULL OFF. I WANT TO BE CHANGED!" She gets down on the floor and tries to pull off her shorts. I go to take her out, but I can't keep her contained. Tony has to take her instead. It's why I don't do things solo much at all any more. It's too scary. Another scene---Janey is in the back yard. She notices the neighbors are having a cookout, and goes to the fence and yells to them "I WANT A HOT DOG!" They are probably so startled to be addressed directly by Janey they don't know what to say. I take her inside for a hot dog.

But a more cheerful scene---we are picking up Freddy from a class he's been at. Janey is like a comedian in the car. She repeats almost everything we say, with a funny twist or a changed word. She recalls long ago phrases, and seems to be doing little routines. She sasses at Freddy, in a little sister way. We are all laughing our heads off. She's like a one woman show.

She gets very defiant. That's the hardest part. She wants some of my coffee drink. I say no. As I turn my head, she grabs it and flings it on the floor, then looks at me. It feels like she wants me to yell, and I give in and yell. I am not a yeller. But I am yelling repeatedly lately. I hate that. I can stay calm if I feel she doesn't know what she is doing, but lately, it feels like she does know very well. She wants a little excitement.

I think, overall, it's a good stage. But a very, very, very tiring one.

Friday, August 3, 2012

Late edition

I thought Janey was asleep on my bed, but she got up and came to me, saying "snuggle on Mama's bed", which is one of her most common phrases. As she grabbed me for a snuggle, I became covered with, well, something that should have gone in the potty. And as I yelled for Tony, I saw the bed was also covered with that lovely substance, and much of the floor. All this happened with me literally within an arm's length of her. Every single blanket and sheet was affected. So Tony took Janey off for the second bath within an hour, I dragged everything to the cellar laundry, washed the floor, started the laundry (it will take multiple loads to do) and then, went outside in the dark and just sat there for a while.

Today has been a rough day. I got scary news about a relative, who has struggled with demons all his life. I woke with a migraine. It has been hot and humid. Overall, though, Janey has been cheerful, and until this evening I was holding it together. Now, I'm not. Sometimes it just all feels so overwhelming and never-ending. Not even just Janey, but so many people's struggles. I know so many people who struggle every day to make sense of their lives, to find meaning in their life after difficult childhoods, or multiple losses or internal beasts that just don't want to let go. I wish I could do more for others; I wish my own life was not so overwhelming that I often don't have the resources to help others more. I don't want to be the one who needs help. That is not a role I ever, ever wanted to have. And yet it is teaching me, although it's a hard lesson. There is not help out there as there should be. We don't have answers for life's tough struggles. I get tired of reading and hearing about therapy, counselling. Not that they don't have their places, but they don't fix anyway. Some problems because they are not fixable, some because talking about them is not what is needed. What is needed is money, programs, volunteers, a change of society's heart.

I will stop before I turn to a bit of rambling. But I'll leave with a thought. Pick someone you know that needs help---an ear to listen, a friendly smile, a word of encouragement. Not money, not any long term commitment, but just a kind boost. Pick someone like that every day, and give them that boost. If you are that someone needing the boost, I want to say---you are not alone.

Pets and autism (or cats and autism, anyway!)

I've seen some articles lately talking about a study on the benefits of pets for children with autism (here) An interesting part of the article was that the benefits weren't seen if the pets were around from the time the child was born, only if the family got a pet around when the child was 5. Now there's a helpful idea---when you have a baby, on the off chance the baby might become autistic, hold off getting a pet until they are 5, to reap maximum benefits. I joke a little, of course, but it's like so many studies and articles I read. They might be interesting, but they are of little practical use in Janey's life. I wish the money spend on this kind of studies could be better used.

How do the cats affect Janey? Not much, I guess because we foolishly had them since she was born. But seriously, it's like the cats most times are in a parallel universe. Janey pays them no mind at all. She doesn't generally touch them, look at them or play with them. Even if they run right into her, she just brushes them off. Freddy has been working on this, trying to get her to pat them, and that has shown just a little bit of success. The other day, we were shocked when Janey tried to pick up one of them, Vernon, our most standoffish cat. He didn't let her, slipping out of her attempt, and it was interesting that was the cat she chose. Maybe it was because he doesn't try to get her attention (not that any of them do, too much)

I've written before about how Janey used to love dogs, then became terrified of them. Now she seems a little more okay with them, and although it's never going to happen, I wonder how she would do with a therapy type dog, a dog that loved her and showed her a lot of attention. I think it would be frustrating for the dog, but I could be wrong.

I've thought a bit about horse riding therapy, but it's expensive and also not in the city. I wonder how Janey would do with that. Horses might be big enough so they almost seem more like a form of transportation or a ride to her than an animal, which could be good but kind of misses the point.

I've heard people say that all cats are autistic, but if you really know cats, that's far from the truth. The cats in many ways are more socially aware than Janey is. They follow my non-verbal language carefully. They know as if by psychic means if I am thinking about feeding them, and respond by lots of noise and getting under my feet and pointed looks to keep me going toward the food. They watch each other closely, and they play-fight, snuggle each other, have a leader and followers, they act differently when strangers are in the house---they are very social in a lot of ways. Janey does some of those things some of the time, but none as consistently as they do.

My conclusion? I wouldn't rush out and get pets for your autistic child in hopes of a social benefit. But I wouldn't NOT get them either. I think this is an area where autistic kids are as different in their attitudes toward animals as non-autistic kids are.

Thursday, August 2, 2012

Two Janey Stories

Janey and I are driving her to summertime school. I have the iPod on random, listening to songs. "He Stopped Loving Her Today" comes on ( if you don't know the song, you can hear it here ). A few songs later, Janey starts screaming "A terrible song! A terrible song!" I assume she means whatever song is playing just then, and turn off the music. Then she starts saying in an hysterical voice "HE STOPPED LOVING HER TODAY! HE STOPPED LOVING HER TODAY!" She is crying and crying. I say "It's just a song, Janey. It's over. Don't worry" but she keeps crying. I say "Mama will NEVER stop loving you. That's impossible!" She calms a little. I go on "Daddy will never stop loving you. William and Freddy will never stop loving you. None of us will. We never could" She is a little calmer, but a few minutes later, starts again---"he STOPPED LOVING her today!" I wonder at what she picks up on. Is it that somehow that somehow she never thought of that concept---that someone could stop loving someone else? It must terrify her. But it's so hard to figure out how she gets those glimpses of clarity. How is it that she can sometimes seem to understand so little, then suddenly be horrified by the lyrics of a song? What else is she understanding that we have no idea she is?

It's evening. Freddy and Tony are playing badminton in the driveway---not really playing, just hitting a birdie back and forth. I get Janey a racket and she holds it happily. Tony hits a few shots at her, very softly, and she hits them in the air. She laughs in hysterical delight. She runs up and down the driveway with the racket, just so thrilled to be included, to be outside, to have us around, to play with the family. I take a turn, and fall into a wet bush trying to get the birdie. We all laugh until we almost cry. Janey jumps up and down, happy as I've ever seen her. It strikes me that, that moment, life is perfect.