Wednesday, February 29, 2012

The Moon

Just a little cool note---last night about 8 Janey said "I want to see the moon" It was cold out, and she was already in pajamas, but she was insistent, so we put on her shoes and took her out to see it---a pretty half moon with a ring around it due to snow coming. She was so happy. I love looking at the sky, and so does Freddy, and it was just so cool to see another interest of Janey's showing itself. A few months ago, I think she was scared of the moon. When we'd come out of afterschool in the dark, and the moon was full, it would startle her in the sky, so I started pointing to it right away if it was up there, to prepare her. I guess it worked. I love small, special moments like that.

Monday, February 27, 2012

NOT Thinking In Pictures

I read an article in list form yesterday that kind of got me going, one of those "10 things you should know about autistic kids" type things. It was overall pretty well done, but more than twice, it stressed how you have to keep in mind that autistic kids are visual learners. Lately, it seems like I hear that constantly. I'm sure a lot of it comes from Temple Grandin and the whole "Thinking in Pictures". But NOT all kids with autism are visual learners or thinkers. I'm not inside Janey's mind, but I feel very confident in saying she is HEAVILY an auditory thinker and learner.

I base this on several things. One is that typical visual cues for kids with autism just don't work for her. Her teachers and therapists have noticed this too. I have never seen her show the slightest interest in a picture schedule, she has no interest in that picture kind of writing that is often used for kids with special needs, she is not interested in looking through books of pictures---none of that. On the other hand, she is and always has been EXTREMELY oriented to auditory things. This is shown in her fairly extreme echolalia, and her sensitivity to sounds (the "cracking noise") and her love of music. She is actually getting pretty good at following verbal directions, and she is highly tuned into the sounds of talking---if someone sounds angry or happy or annoyed.

In most books I've read about autism, there is a slight mention that a few kids with autism are auditory learners, but I think it's not too common. I think it's both an asset to Janey and a detriment to her learning. It's a detriment because so much of what is developed for kids with autism assumes they will learn visually. I can't see her using a icon kind of speech system, or PECS exchange pictures (that has been tried over and over with her, and everyone agrees it's kind of a bust, as she just likes to crumple the cards, I think to hear the velcro sound!) It's also hurting her ability to learn to know letters, or to someday read. I don't think her mind is set up to recognize shapes or letters very well. However, it's a asset because I think she can talk more than most kids with her level of involvement can. In most ways, from what I can gather, she'd be considered fairly on the low end of the autism spectrum. She has a great deal of trouble learning, she doesn't understand basic concepts like birthdays or "tomorrow", I would no more expect her to answer a question like "What do you do with soap?" than fly to the moon (I saw that question as an early one to teach kids in a book), I am not really sure she understands what family members are...but she talks. She asks for what she wants, she recites all kinds of lines, she even is starting just a little to play around with words. Last night she sang my husband a short parody of "You Are My Sunshine"----"You are my Daddy, my only Daddy..." I can say things like "bring me the phone" or even two step things like "close the fridge and bring me a cup" and if she's in the mood, she does it.

I can understand why most information and teaching is aimed at visual autistic kids. They are certainly the majority. But I think a little of it is that when high-functioning autistic people tell how they think, and they are visual learners, it's pretty hard for them to picture that other autistic people might not be. That's part of autism, after all---it's hard to see things from other people's perspectives. I can't tell you how many people have said that they understand autism a lot more after reading Temple Grandin. And although I admire her greatly, I don't think Janey is anything like her in terms of learning style.

As the blog is called---rarer in girls. And Janey gets another rare attribute in her auditory nature. Oh, well. Nothing like being unique---isn't that what I used to think?

Saturday, February 25, 2012

Talking like Charlie Brown's parents

Lately Janey has gotten very into watching Curious George. I've been unsure why---it's not the kind of show she usually likes. There's no music or dancing, and it's a little plot-full, and seems to focus on math and science. But she loves it. It struck me today that what she likes might be how George talks. He talks like a real monkey would talk, with monkey sounds. It made me think of some other media Janey likes. She likes Teletubbies quite a bit, with their extremely simplified and badly pronounced style of talking, and she loves to watch me play Animal Crossing, in which the animals talk a speech-like nonsense. In all three, there is talking that doesn't have actual meaning for the most part. I think that might be relaxing for her to listen to. She can hear speech patterns, but she doesn't have to try to decipher what she is hearing. She HEARS speech just fine, as shown by her pitch-perfect echolalia, but how much she really understands is hard to say. She does have a high level of sensitivity to emotion in speech. If we say something even jokingly to each other in an angry or sad tone, she starts to cry. If we sound very happy, it usually make her happy, unless we sound TOO happy, then she gets a little overwhelmed. So maybe the Charlie Brown Parent type speech is easier to practice on---she can just work on hearing the tone and the rhythm, and not the meaning. Maybe that's part of why she likes music too, for the same reason some people don't like it when they can't understand lyrics. You don't have to completely understand lyrics to enjoy a song.

It makes me think if she could learn to read, she'd probably like it. That's like the opposite of Charlie Brown Parent talk---it's just the meaning of the words, without having to listen to the tone. Or maybe she would respond to a computer style voice reading, without any emotion or varying rhythm. It's all interesting to try to figure out, but I wish I could figure it out a little better. It's hard to see how frustrated she gets, or how scared when she thinks people are upset around her and she has no idea what they are upset about. It's hard sometimes hearing her echo speech, if I think about how that is an attempt to figure it out, to maybe save what she's heard for later processing, or for a clip to use in a situation she thinks it will work for. It make me think about how much we can take talking and understanding and conversation for granted. I see 2 and 3 year olds talking to their mothers in stores and can get all teary, because they get their points across so well, and sometimes when the mothers don't pay attention to them, or seem annoyed with having to answer questions, I just want to scream at them "Don't you know what a miracle you are seeing? Don't you realize how wonderful it is to have a child that can communicate like that?" And I know how wonderful it is that I have two children that can talk my ears off, and argue skillfully, and banter with the best of them. I'll never take it for granted, I hope.

Friday, February 24, 2012

A picture that captures Janey pretty well


I've been fooling around with camera things on the iPod---different filters and looks. I took this picture today of Janey that captures her pretty well---the autism in her face but also the Janey that is just Janey.

Wednesday, February 22, 2012

A long day with Janey

It's vacation week, and overall, Janey has been cheerful. I'm very grateful for that, but I have to admit, today was a day I was mostly alone with her all day, and I did not enjoy the day. That sounds awful to admit, but it's true. It's hard being alone all day with Janey. It's hard in a couple ways, but the biggest one is the trapped feeling. As Janey gets bigger, it's harder and harder for me to attempt taking her any place alone. She is too big for me to easily pick up, and big enough to escape my hand holding. She can and has been known to just run away, regardless of where we are. It's my nightmare. And even if that doesn't happen, she might suddenly have a tantrum. She's a two person job. Right now, Tony can still pick her up, and so he does take her alone places at times. But I do increasingly rarely. And even when we stay home, I'm trapped. If I decide to do something decadent like using the bathroom or going the few feet out to get the mail, Janey will take that opportunity to do something fun, like dump all the Lucky Charms on the floor to look for marshmellows, or pour herself soda, or take off her diaper and play with the contents of it, or something else. So she comes with me wherever I go, and she doesn't like that.

Keeping her entertained is also hard. She has limited interests, and lately, TV doesn't hold her attention all the time, which I am glad of, but it makes it harder. We do iPad, I read to her as much as she'll let me, I try to get her to draw---and all that takes about 15 minutes, it seems, and she's restless. I threw caution to the wind today and walked to the post office with her, about a half mile round trip. She stayed with me, but the sidewalk was under repair and we had to walk in the street, and I was terrified she'd bolt. She also likes to touch lovely things on the ground---old bottles left around by winos, assorted interesting trash. She was happy, though, yelling loudly and jumping about, and echoing with her trademark echolalia some comments people in the crosswalk made (nothing bad, but they were startled and stared at her like she was in a zoo)

The truth is, no matter how much progress Janey is making, it's still pretty hard. I am trying to be positive lately, but today I felt just tired. I was wishing she was a "regular" 7 year old, someone with friends, someone that could go to a vacation week camp, or enjoy a trip to the library, or the mall, or be starting to read to herself, or even just entertain herself for a second while I went to the bathroom. I was really, really wishing it. She's tired now, and crying for Tony, and that is the other part---I'm never confident she'll stay happy, and when she's not happy, everything is that much harder.

Tony has the rest of vacation week off, thankfully. I'll make it.

Tuesday, February 21, 2012

Bizarre Foods

If you look at what Janey eats in terms of nutrition, she's way ahead of either of my boys at her age, and probably also way ahead of a great deal of the population. But if you look at her food choices, you can't help but be struck by how bizarre many of them are. Bizarre, but overall nutritious. It makes me wonder how much of diet is a result of social expectations. If we really ate what we were drawn to eat, how different would our diets look?

Here's some examples of foods Janey loves----

Ketchup, straight from the bottle
Spicy spaghetti sauce, also cold and from the bottle
Raw onions
Minced garlic cloves, from the jar
Cabbage slaw
Peanuts "in the shell"---they have to be cracked freshly in front of her
Funions
"Cashew peanuts" (which used to be cashews, but now are almonds
Chocolate bunnies (any other form of chocolate animal is NOT acceptable)
Purple Ice Cream (Hood Black Raspberry, nothing else works)
Coffee
The marshmellows from the Lucky Charm
Chinese Rice (fried rice)
Lettuce on its own
Bread, but only good, expensive bread that comes in a French style loaf
"Cake" (which means hugely expensive Tiramisu from Whole Foods)
The frosting from cupcakes
Raisins
Doritos
Chocolate Milk
Chicken (which has to be freshly made by Daddy, but can be in most any form)
"Cheese Cutter" (must be Shaws brand cheese, with the wrapper around for her to examine to make sure we aren't giving her anything else)

And then there's the non-food items that Janey craves, and we try hard to keep away from her...

Play Doh (Janey loves Play-Doh, but loves it for the wrong reasons)
Paper of any kind (And here's an instance where I can relate, as I had a touch of pica myself as a girl, and loved to eat paper. I've learned not to, mostly)
Her sleeves (off and on)
Assorted small pieces of toys (one of the many reasons she needs to be watched at all times)

I don't have much of a conclusion here. Just wonderment, as often, at the mystery that is Janey.

Monday, February 20, 2012

What I've let go

This month has made me reflect on what I've let go in my life. My grandmother died a few weeks ago, at the age of 99. As is often the case when you lose someone, I am feeling guilty. I know I didn't call her or write her or send her presents or visit her as much as I should have during her last years. I keep asking myself how hard it would have been to be a better granddaughter. I know I'm doing the same with some other people that are dear to me---a wonderful friend I met on ebay, my ex-boyfriend's mother who is much like a mother to me, in fact, many friends who I don't do as much for as I should. My friends and family have always been very important to me. I used to be the type who sent out all kinds of Christmas presents, called people on their birthdays, picked up the phone a lot just to check in. And now I'm not. I'm pretty self-centered. If something doesn't work for me, I let it go.

And I tell myself---I've had to do that. Janey takes every ounce of my patience, my creativity, my capacity to be caring. Not every day, but often. Once she is at school, or out with Tony, I collapse. I do nothing, much of the time. Once I get a little energy, there's a huge list of essentials waiting for me---laundry, dishes, bills. And then I need to work, to make the little bit of money that makes the difference between total bare bones and getting take-out once a week. And of course, and they should have come first, I need to give my attention to William and Freddy, and to Tony. There just isn't much left. Any single phone call or present or card might not seem like much, but I've come to feel too often that it's too much. I have retreated into myself.

I'm very lucky I have friends who have stood by me for this. I need them, so much. Other friends haven't really understood, and I feel awful about that. I'm thankful for Facebook, which is not a substitute for real human contact, but which does allow me to get a quick update on how a lot of people are doing, and perhaps just even "like" something they have said. If anyone is reading this and would like to be my friend on Facebook, go ahead and send a friend request (Suzanne Billheimer Amara), because that is the best way to keep up with me, out of necessity.

I hope someday I'll come out of this fog a little. I want to be the friend I once was able to be. I can make excuses, but for some things, there aren't any excuses. My grandmother is gone. She's not coming back. Maybe some people are stronger with this---they have energy left over in spades to keep being the person they were before autism snuck into their life. I don't. And I wish I did.

Friday, February 17, 2012

Inclusion begins at home

Janey attends an inclusion school, and I am a huge proponent of inclusion, at least for the elementary school grades. I can see a time when it might not work---I don't think Janey would get much from an algebra class, or add much to one, but in the early grades, it's nothing short of wonderful. And I would dare to say---almost more for the "regular" kids than the special needs kids. Janey's amazing teachers are helping all children in her class learn how to approach her, how to befriend her, how to appreciate her special talents, and at the same time, teaching Janey how to greet them, how to start to navigate the "regular" world. I saw the effects of inclusion on my sons, who also went to Janey's school, and I can truly stay it helped them in many ways, academically, socially and perhaps most importantly, character-wise.

I've been thinking lately about inclusion at home. It might sound like a strange notion---of course there's inclusion at home! Janey is here, part of our family, so isn't that automatic inclusion? I think it sometimes isn't. Maybe that's more so with us, because Janey is so much younger than her brothers, and the only girl, so for years, she's been set apart. She needs more attention than they do, and she hasn't always been able to join in with our fun or activities. This wasn't a choice or something we could do much about. But lately, I've felt we are finally achieving some level of family inclusion.

I keep thinking of a few recent family times. One was the Super Bowl halftime show, of which there are plenty of opinions, but we didn't see that gesture! We all watched it, all commented on it, and Janey was fully part of that. She LOVED it---she loves any kind of singing and dancing show more than anything. I felt like we were a united family---not a bunch of people helping a disabled child, but just 5 family members having fun. It was amazing. The same thing happened with the start of the Grammys. Janey enjoyed everything right along with us. We have moments like that most Friday nights---our Chinese take-out night. Janey loves the food, and we all dig in in a way that wouldn't be pretty for outsiders to witness. But it's us---our family---and Janey is a part of it all. We've had a few car rides like that lately too---one I mentioned where Freddy was trying to practice a school speech and Janey was being an annoying little sister---not an annoying autistic little sister, but just your garden variety 7 year old bugging her big brother.

I want to work to have more of these moments. A key is finding something we all enjoy. I think I'm going to seek out more music variety type shows, or perhaps watch more music videos. While we still have all 3 kids at home, which won't be that much longer, I want to do more car trips (although Freddy hates them, but that's family togetherness too---it's not a full day unless someone is hating what we are doing!) and more meals with food we all adore. It's those moments that include us all that are going to be crystalized some day in all of our minds as what a family unit is---what it means to be a family. It's not always easy to do with a disabled child, but like well-done school inclusion, it's more than worth it.

Tuesday, February 14, 2012

A Bedtime Song

For years now, as I got Janey to sleep, I've sung her songs. I did this with her brothers too. I'm no expert singer, but I love thinking of them someday hearing the songs I sing and thinking of me, and it's also just a relaxing way to calm down at bedtime. For the past year or so, part of my bedtime routine with Janey has been to first ask her if she will sing ME a bedtime song. Her part of the routine is what her part in many of our routines is---to say nothing. But last night, after I asked for the maybe 300th time "Will you sing me a bedtime song?", she replied. She replied by singing me all of "Row, Row, Row Your Boat", perfectly and in her sweet, sweet little voice. Tony happened to be there to at the time, and we both were crying our eyes out---luckily it was dark as Janey would not have gotten why we were crying!

Janey has always loved music, but the last month, it seems her love had kicked up a notch. She is starting to notice and have opinions about certain songs and singers more, which she shows by asking for the songs over and over. I've got to give a shout-out to The Gatlin Brothers, who I know just about nothing about. They are Janey's favorite group, starting from her love of her favorite song "All the Gold in California" Why exactly this song speaks to her so much is beyond me, but boy, does she love it. She has also gotten extremely fond of "Tie a Yellow Ribbon 'Round the Old Oak Tree". She loves to belt out the line "Now the whole damn bus is cheering", which I kind of hope she doesn't sing at school! She also loves "Morning Train" by Sheena Easton and "Everyday" by Buddy Holly. I've made a little playlist of her songs for the car, and although I must admit I'm getting sick of them a bit, it's worth it to see the joy on her face when they play, and to hear her singing them at random times. It's a lot of fun to see what her taste in music is.

Music is also a way we can all have fun as a family, even with TV watching. Janey was mesmorized by Madonna's half time Super Bowl show, and she loved watching the beginning of the Grammys with us. It's wonderful when we have something the whole family enjoys and we can do it together, without it being a situation where we are doing something FOR Janey---not that we mind that, but it's more fun to just do something WITH Janey. All five of us love music, although we have differing levels of talent, and I look forward to seeing what the next song Janey falls in love with is!

Sunday, February 12, 2012

Further thoughts on iPad apps and autism

Janey's had her iPad a while now. I would say it's a moderate success. She certainly enjoys playing with it, navigates it well and seems to be calmed by it. She is probably learning from it too, but it's not a huge, huge step forward, although I can see how it might be for some kids.

The big thing is finding the right apps. Janey likes some very specific things in an app. The big three words are PREDICTABLE, SIMPLE and REWARDING. The apps have to be without huge surprises. Janey likes to know pretty much what is coming next. They also have to be simple to use. They don't have to be one touch simple, but they can't have all kind of menus and choices, or she just gives up on them. They also have to be rewarding. This is the big problem with some of the autism-specific apps. They are SO simple and predictable that they are boring. Nothing happens that would make a kid keep playing. They seem like they might be good to use at school with someone human present to give rewards every now and then, but Janey just isn't motivated to keep going with them without something happening she likes.

Those things being said, I'm a little surprised at the type of apps Janey uses the most. They are far more educational than I would have guessed she'd pick. She likes ones that involve putting letters in place to make a word, or counting items. I thought she'd like music apps more, and she was very taken with a few Christmas ones, but in general, her taste in music is more sophisticated than the jingle-jangle tunes most kid apps seem to have.

Here's a list of five of her favorite apps!

Whizzit 123

This is a simple counting app. A number of the same item show up on the screen, and once each one is touched, the item changes somehow, such as a pinwheel starts to spin, and it's not able to be touched again, so you learn to count one thing at a time only once. Janey likes the smaller numbers of things on a screen. If a screen shows up with something like 15 flies, she knows how to go back to the start and get another screen! When she does successfully count everything, the game goes to the next screen. Janey loves the start screen for this app, too---it plays a song she likes!

FirstWords Christmas

There are a whole bunch of FirstWords apps, and Janey likes them all, but she likes this Christmas one best, even now that Christmas is over! A screen comes up with letters scattered about, like tiles, and you have to move the tiles into the right place to form a word. The word is already there, you just have to put the tiles over the letters. There is a picture on each sceen, and when you finish putting the letters in place, the picture spins around and makes a sound, and the next screen comes up (this is a crucial point, as if the next screen of something doesn't come up quickly, Janey loses interest). Janey loves doing this one for long, long periods, and has gotten noticably better at quickly moving the letters into place.

Find Me

This is the only specifically made for autistic kids app that Janey has gotten into, and it's a very good one! A boy shows up on the screen, and a voice asks you to find him. It starts very simply, with just the boy on the screen and nothing else, but very gradually, there's more in the background, like butterflies and trains and flowers, sometimes moving. Once you find the boy 5 times, a screen comes up with a music-box like song and shapes dancing around. This is the kind of reward Janey likes---it doesn't vary, and it's interesting enough to keep her playing, and she also seems to really like finding the boys, and how each time finding him is a little harder. Whoever wrote this app seems to really get kids with autism.

Zoo Train

This is a Busy Bee Preschool app. It has several parts, but Janey has completely no interest in anything but the word train part. In that, a train with a flatbed comes along with a word on it, and letters that need to be put in place, pretty much like the FirstWords app. Once you put them in place, the item shows up on the flatbed, and the train moves out of the station, saying the word as it goes. Janey likes trains fairly well, and I think she likes the movement. What she doesn't like in this one is that for every 5 words, you get a reward screen where you can pick a sticker. This disrupts her flow, and she has no interest in picking the stickers. She reacts as she often does to things like this---she goes back to the app selection screen and starts over, hoping to get past that part. It makes the app not that engaging, but she seems to like it enough to keep going back to it.

Peek-A-Zoo

This is one of my favorites, and Janey likes it moderately well. It shows a screen of 8 cartoon animals, and a question comes up, spoken and written, like "Who is Sleeping?" You have to pick the right animal, and then he comes up and makes his sound. This is very well done, and I think could be huge for autistic kids, but some of the questions are too abstract for Janey, like "Who is trying to hide?" where you have to find an animal that is fading in and out---she just doesn't seem to get that. But the music and the simplified pictures are enough so she plays this a fair amount.


I think there is still a HUGE world of apps to be written out there for autistic kids. I don't think anyone's written the "killer app" yet. I wish I knew how to write apps. I'd love one that could use your existing music collection as a reward. Janey would do a lot more to get to hear her favorite songs, like "Tie a Yellow Ribbon Round the Old Oak Tree", but kids apps just don't often contain songs about people getting out of prison. I'd also like a look-see reading app. I'm all for phonics, but for Janey, it's not how she's going to learn to read, if she does. I'd love an app with two words to choose from, and a reward if you pick the word that is spoken. I'd also like an app with two faces showing a feeling shown (photos) and you have to pick the correct emotion.

Overall, if you have an autistic child and can swing it at all, I think an iPad is worth it. Not a must-have, at this point, but worth it.

Tuesday, February 7, 2012

The Cracking Noise

Janey has been having a long string of great days. I had a feeling tonight might be rough, though, as she was doing her manic thing in the car on the way home from school---laughing hysterically for most of the way home. Tonight she was fairly happy, with some manic times, until out of the blue, she started screaming. She had been playing with her iPad, happily, and I was watching her, and nothing seemed to happen, but it was a sudden, huge wave of screaming. She screamed for about an hour. I tried talking to her, and most of the time, just wasn't getting through, but at one point I asked if she heard a scary noise (as that is the only thing she's ever really given as a reason for the screaming) and she said "I heard the cracking noise!" I don't know if at this point she's echoing herself from past times she's told me that, or if she really hears some noise, either internally or externally, that scares her. Sometimes it's the cracking noise, sometimes the banging noise, sometimes the clicking noise---but whatever it is, or originally was, it scares the heck out of her. We live near a major road, and it could be cars banging over bumps, or far-away sirens, or who knows what, but I think more it's something inside, or just a way she has of describing what upsets her, when she doesn't understand herself. She's back to happy now, but not sleepy, at almost 9pm. She sleeps less well when she's manic or sad.

I truly think if she learned to talk more, the crying would be less. That's partly just because it's hard to scream and talk at the same time, and partly because then we could try very hard to eliminate whatever it is that sets her off. I know sometimes there's no saying, even for those of us who CAN say, but I'm going to keep working hard on talking about feelings, to the extent she can understand. Let's hope I can keep saying "You feel happy today!" more days than not.

Sunday, February 5, 2012

Halloween!

Janey came up to me just now and said "Halloween!" in her voice that means "I want Halloween right now!" Then she said "custom" which I figured out meant "costume". And after that "Peter and the Wolf!" A nice golden week sequence. I have no idea where she has ever heard of Peter and the Wolf, and I've never heard her say "costume" before. And last Halloween, a brief attempt to get her in a costume and out trick-or-treating didn't go well at all. But still... I did my best to explain Halloween is a once a year kind of thing, and if we went trick-or-treating right now, we'd strike out, due to a lack of candy preparedness, to say nothing of how people would not like to be disturbed in the midst of the Super Bowl. Janey didn't get much of what I was saying, I'm sure, but I enjoyed the whole conversation, and she seems satisfied with my answer.

The Golden Week

For lo! the days are hastening on,
By prophet bards foretold,
When, with the ever-circling years,
Shall come the Age of Gold

Although my faith is not as strong as it once was, and in fact I probably could rightly be termed an agnostic, I do love Christmas carols and hymns. My mother is a church organist, and I grew up with the songs of religious music around the house. The verse above is from a late stanza of "It Came Upon a Midnight Clear", and I have always loved it. Lately, it to some extent describes Janey---instead of "ever-circling years", it's ever-circling weeks. She has a week of crying, a week of manic excitement, a quiet week during which she barely talks, an in-the-middle week and once in a long time, a Golden Week. This past week was a Golden Week.

It's hard to describe to someone that doesn't know Janey what her golden times are like, but if you are around her, you can't miss them. It's striking. During the golden times, she talks far, far more---not echolalia, but actually talking---not full sentences, but just hugely more connected words and phrases. She looks more connected---she looks engaged and happy and, if I might say what I wouldn't want others to say, "normal". She seems to suddenly make leaps forward, as if all the work we do with her at home and at school suddenly clicks into place. It's wonderful.

Friday night was a great example. Tony finally got home from two weeks away on a business trip, and picked Janey up. Right away, she let him know what had been on her mind for those two weeks---Chinese rice! She very badly wanted him to get her some Chinese fried rice, and she stayed on message. When he got home, we all were almost on the floor laughing over how much she made sure he was going to order the rice soon, by asking in every way she knows how "I want Chinese rice! I'll get you some Chinese rice! Let's go to Chinese rice! Call the phone!" Tony looked at the menu and remarked if we ordered more than $25 worth, we could get the free crab rangoons, and Janey added that in----"I want free crab rangoons and Chinese rice!". When the food came, she sat down with all of us and ate the rice like a pro, as happy and as connected as I think almost any seven year old would be. At one moment, all five of us were having one of the free crab rangoons, and I had one of those moments where everything just feels perfect---seeing my family all together, all happy, all doing the same thing.

The whole weekend has been like that. Janey is picking up on what we say, using our words in her own phrases, doing cute things like bringing me my pocketbook and saying "California" when she wants to go someplace (she loves to hear "All the Gold in California" in the car), saying "Hi, Nana and Grandpa" nicely to my parents on the phone, reading with me happily, dancing with us----it's been great.

And I wish, I hope, I dream, as I always do, that this is not just a cycle, that this is THE turnaround, that she will stay this way forever. And because hope springs eternal, I think that it could happen. But it's unlikely. We've had times like this before, and then they end. But the fact that they can happen keeps us all going, I think---our family, her school family and all of us. She's my amazing little girl.

Thursday, February 2, 2012

What if I knew from the start?

I just finished a book I really liked---"The Year My Son and I Were Born" by Kathryn Lynard Soper. It was about the first year of her son's life. He has Down Syndrome, and she wrote so honestly that it was truly moving. She had a very hard time dealing with the diagnosis, and depression partly resulting from it. One point she made that really hit me was about decision making---how if you make a decision about your child based on what you know at that time, and using the facts and your emotions and your knowledge of your child, even if it later turns out it was the wrong decision, you can't regret that, because it was the right decision for you when you made it. In other words, second-guessing is a useless emotion. I need to keep that in mind---that's powerful stuff.

The other big thought the book set off in me was wondering what it would have been like to know from the time of Janey's birth that she had autism. How would that change things? Would it have been better, or worse? I can think of things both ways. It would have been heartbreaking, and I think it would have made the first year a lot harder, as I would have been dealing with a lot of emotions at the same time I was just trying to get through that first year of babyhood, which is hard in any case at all. But I could have started sooner with any kind of early intervention for autism, which might have helped (and might not have helped). If Janey's development had been the same as it actually was, except I knew she was going to regress, it would have been heartbreaking in a way to watch her talk in ways I would have known she'd never maybe talk again. I think a lot about a doctor's appointment when Janey was just turning two. She had it along with Freddy, since they have the same birthday. It was Freddy's turn first, and Janey spent his whole appointment trying to catch our pediatrician's eyes and connect and flirt with him in that two year old way, and at one point he said "Well, at least we can say she's not on the autistic spectrum!". I can't think of that moment, ever, without crying. He was looking for signs she was, due to my older son William at one point being diagnosed as on the spectrum, and even LOOKING for signs, he didn't see any. And about a year and a half later, no-one would be able to look at Janey and NOT see she was autistic. So maybe ignorance was bliss in those early years. We worried a lot about her, but it was because she wasn't walking. You can see it in pictures of her---you can almost see the month she started showing the signs. Her eyes change. Like my eyes are changing right now from my tears.

Janey is doing very, very well the last few days. She is doing some fantastic talking, and greeting of people, and connections. I should be writing about that. And I will. But right now, I think I'll take a little nap. I need it.

Wednesday, February 1, 2012

Defiant---the good and the bad

Yesterday after school the weather was lovely, as a lot of this winter has been. I let Janey play in the driveway for a while, after closing the gate at the end of it (we live RIGHT on a main road) and she ran around happily for a few minutes. Then, suddenly, she got the urge her father is so often struck with, for Chinese food. She came up to me and said "Chinese rice!" which is fried rice. She grabbed my hand and pulled me toward the gate. I said "No, Janey, not tonight. When Daddy gets home from his trip on Friday" And she screamed, and pulled at the gate. I held her hand and started firmly trying to direct her inside, but she pulled her hand away and said "NO! Chinese RICE!" and kept trying to open the gate, having decided I guess to just go get the rice on her own at the restaurant down the block. I finally had to pick her up, which took every ounce of strength I had, and bring her inside, and still, it took her a while to calm down.

So what's the good? I don't think Janey has ever before defied me in quite such a way. She's gotten furious when I said no, she's continued to ask for something for hours, but this felt different. It felt like she was saying NO to me, saying "I'm NOT going to do what you say" instead of just getting upset she wasn't getting what she wanted. Before, I think she's thought asking is just a way to get that person to do what you want, and when I said no, she didn't really get I was making a decision---it was more like the cosmos or whatever was just not providing what it was supposed to. But this felt like she knew I was saying no, and she realized enough that she had a will of her own and opinions of her own that were different than mine that she decided to just tell ME no. I might be over-reading into this, but something felt different, and I was actually pleased about that.

However---the bad. It was very, very hard getting Janey into the house. She's up over 50 pounds now, and I can't lift her easily at all. In a few more months, I think I won't be able to at all. If she makes up her mind she isn't going someplace I want her to go, or if she wants to go someplace I say no to, it's going to be physically impossible for me to stop her by picking her up. That's very, very scary to me. Reasoning with her is not going to work, a lot of the time. She is starting to realize that when we hold hands, it doesn't lock her hand in there. This is a stage all kids go through, I think, but most do it when they are in their early 2s (and my boys didn't do it for very long at all---they were not ever as adventurous as Janey), and at that age, you can still just pick them up. What am I going to do when I can't do that with Janey? I really have no idea. I feel like right now, we are being as careful as it's possible to be to make sure she doesn't run off or get hurt, but we will have to be even more so, and so will everyone else dealing with Janey. I can only hope that with her increased awareness of herself vs. others, she also gets some increased awareness of danger. Boy, do I hope that.