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Monday, May 28, 2012

Why is the crying so hard?

Janey had a very long happy period, but the last few weeks, the crying is back. It's not all day every day, but it's part of most days. And it's making me reflect---why is it so very, very hard to take? Why does one day filled with crying practically wipe out my memory and happiness of weeks of good days? My friend Michelle said something similar to this today, and I agree 100%, but I'm still not sure why it's the case.

I have some guesses. With most kids, when they have a bad day, you know the reason. And you know it will get better. With Janey, I don't know the reason, and I don't know if it will get better. There was The Bad Time, or several of them, when it really didn't. Of course, her big regression, and also that awful crying time several years back. They either never got better or didn't get better for a long, long time. And that scars you. It's probably some kind of post-traumatic stress type feeling. Everything flashes back, and I feel helpless and hopeless.

It's also I think hard-wired into mothers to be upset by their children crying. If we weren't, babies wouldn't last long. When a baby cries, we can't ignore it, or at least it's nearly impossible to do so. One of the first things you learn as a mother is how to understand the cries, how to try to stop them, to make the baby happy. And Janey is still my baby, in so many ways. When she cries, I feel I have to figure out why, and to stop her, to make her happy. And I can't. She's crying right now (Tony is with her), and it's all I can do to not get up, to ask her the question that almost never, ever gets answered "What's wrong, sweetie? How can I make you feel better?" It's usually useless. She doesn't know what's wrong, or she doesn't know how to explain it. She might have pain, or she might have heard a scary noise, or she might be tired or hungry or overwhelmed or bored or angry or frustrated or who knows what. I feel useless as a mother when she cries. I know that's not true, not logical, but a mother's inner instincts aren't always logical.

I tell myself during the good days to treasure them, to remember how it is when she is happy. I try to convince myself that someday she won't cry any more, that if we all keep working and trying, she will learn to communicate enough to not cry. I tell myself in the meantime I can't let the crying turn me inside out so much. But truthfully, none of that works. I don't know if it ever will.

Saturday, May 26, 2012

Sleep, or not

Janey generally sleeps fairly well. She goes to bed about 8, and wakes up about 6:30 or 7. She's a solid sleeper, as all my kids have learned to be, living on a major street.

However, when she gets into certain modes, all the good sleeping goes out the window. Usually, that's when she's in what we call her manic mode. These modes seem to come around every few months, and last usually about 4 to 5 days. During that time, she is turned up to high all the time. She laughs hysterically a lot, she is in movement all the time and the delayed echolalia goes into high gear---she recites all day long. Lately, she's been in kind of a mixed mode---rapidly changing emotions. She goes from laughing and reciting to screaming and crying in minutes. But it's like the manic mode in the reduced need for sleep. Last night, she woke at 3am. She never went back to sleep---she rarely does when she wakes up early like that. I stayed up with her from 3-5, and then Tony from 5-7, after which we were both awake (but tired!) You would think she'd nap after a time like that, or at least go to bed early, but that almost never happens. She was up until 9:30 tonight, and went to sleep reluctantly even then. It truly seems like she needs less sleep when she gets into a streak like this.

However, we need just the same amount of sleep, and it's pretty tough. It's tougher for Tony than me, if it's during the week. I nap during the day when I have to, but he can't. Even on weekends, we aren't at our best all day after a night like that. I have no idea what would work. It's hard because we can't just let her play while we sleep. She can't be unattended like that. Of course we try telling her she has to stay in bed, but if she's awake, we still have to be on alert, and although she obeys better than she used to, we certainly can't count on her staying in bed enough to go back to sleep.

I guess we are lucky that it's not like this most of the time. I know some autistic kids have sleep cycles that never, ever get synchronized with the norm. But I hope very much she sleeps all night tonight.

Friday, May 25, 2012

Okay, another check on the checklist

The latest news from the world of autism? Fever during pregnancy can double the risk of autism. Here's an article. Lovely. Another way I caused Janey's autism. It's like I went into the future, found a list of all the ways they were going to decide autism could be caused, made up a checklist and tried to hit them all. If there was something called double autism, she'd probably have that, I hit so many of those checkmarks.

The fever I had, at 12 weeks, was pretty severe. It was caused by my reaction to Aldomet, which I was put on due to getting preeclampsia (high blood pressure and other problems) early in my pregnancy. Of course, preeclampsia is another risk factor recently discovered for autism. Of course.

I can't wish they wouldn't discover all this stuff. I want to help other mothers-to-be. And I know that I certainly didn't MEAN to put Janey at risk for autism. I would have done ANYTHING during my pregnancy to avoid it, if I had known. But I didn't. Nor did Tony, who was an older father, one of the rare instances where fathers can join in the guilt parade. I didn't know another medication I was taking, which I repeatedly asked my OB if I should stop taking, would later to said to be another possible cause.

I know it doesn't do a bit of good for me, or for Janey, to get upset over all this. I don't have a time machine. I can't change anything. And I should feel happy for others, who might not have a child with autism due to all the recent discoveries. But of course, I feel guilty. That's what mothers do.

Thursday, May 24, 2012

The Political Incorrectness of Negative Emotions

I've been reading a book to review for Amazon called When We Were the Kennedys. I haven't finished yet, but can already say it's a great book. It comes out in July, if anyone is interested. Anyway, although it's not the major point of this memoir, the book talks about the author's sister, Betty, who "in those days was called retarded". As I bet most parents of kids with what we now called special needs do, I compared her to Janey. She was higher functioning (another now term) than Janey---she went to a regular class, although she in no way kept up with the other kids, she could answer questions and write her name and knit a little.

What struck me about it all was how it was then (in the early 60s) okay to express that having a child like Betty was in a lot of ways very, very hard. It was okay to think of it as a tragedy, in a lot of ways, and for other people to feel sorry for the family. It didn't seem like people were told to see Betty as a blessing or as a treat from God for being good parents (although the family was very religious and did seem like very good parents). Betty was loved, but it was not presumed that she was somehow sent to teach everyone lessons in tolerance and love.

Today, I think there's a huge amount of pressure to think positively about disabilities. And that is good, in a lot of ways. I wouldn't want people seeing Janey as a tragedy, or people just shaking their heads and assuming that there's nothing that can be done for her. But in other ways, it puts a huge amount of pressure on parents. It isn't even politically correct in most cases to say truthfully that Janey is retarded. "Retarded" is a bad, bad, bad word. You can say "developmentally delayed" or "cognitively challenged" or terms like that, but the problem can be that no-one quite knows what you mean. I still think often of when one of my oldest friends, that doesn't see Janey often, was shocked when she realized how behind Janey was. She had equated autism with what a lot of people do---someone quirky and brilliant. And I said the bad word. I told her---Janey is retarded. I feel guilty writing that, like I'm being horrible. But it's true. It's a negative word, but why is that unacceptable? It's not a blessing that Janey has so much trouble learning. It's not a test, it's not a puzzle to be figured out. It's something that is wrong with her brain, and makes it very hard for her to learn. I don't see that as a positive thing.

If you do a quick read of a lot of blogs about disabilities out there, you can see the pressure put on parents to be positive. I think there's a lot that doesn't get written down. Or maybe I'm the only one. But I don't think so. I love Janey, I often delight in Janey, I find her fascinating and adorable and I in many ways love being her mother. But all that being sad, I have huge amounts of sadness, anger, discouragement, depression and frustration over how life with her is. This morning is an example---she screamed from the time she woke up, she fought getting dressed and her hair done with tooth and nail, literally, she kicked things around in the car, she ran away from me in the schoolyard, she tossed her shoes away as I tried to get her into her classroom. I don't feel positive about that. I feel worn out, discouraged, depressed. I feel those feelings for myself, and even more for Janey. I worry about her life. I despair when I think about her when I am someday gone.

There was so much about the past treatment of people like Janey that was awful. There was no special education, there was little understanding and life for the Janeys of the world was bleak. I'm certainly in no way at all wishing it was then. But I do wish it was still okay to not be positive now and then, to openly say "This is extremely hard. This is not fair to any of us". And so I'll say it.

Tuesday, May 22, 2012

It was bound to happen...

Until this point, I've been pretty cool with Janey's musical taste. I can listen to what she likes fairly happily, which is lucky, as she plays her favorite songs for hours on end on the iPod base. She has her own playlist, of about 25 songs, and she knows how to pick what song she wants, and even how to put the setting on replay, so the same song plays over and over. I'm not even sure how to do that. She picks the songs she likes by hearing them in the car from my big list---I have about 2000 songs on my iPod. When she likes a song, she picks the main line and repeats it right as the song finishes---"Don't it make my brown eyes!"---and I play it again. If she wants something 4 or so times in a row, I add it to her list. I love the system. Until now...

Yes, it's my own fault. WHY did I think the kitsch factor of getting that Brady Bunch Have a Sunshine Day CD for a dollar at the thrift store, and adding it to my list, was a good idea? The songs didn't come up much---no individual song does. But yesterday, it played. Yes, "Time to Change", the immortal song from the episode where Peter's voice is changing. Here's a video of it, if you've never had the pleasure... Time To Change. Janey was electrified. The second it was over, she screamed out "TIME TO CHANGE!" And it continued, 6 lovely more times before we mercifully reached home.

And of course, I could have been selfish and not added it to her list. But in my determination to let her live as normal a life as possible, I put it on. Kids like music their parents don't. It's part of life. I've listened to more Black Sabbath in my life than any middle-aged woman should, thanks to William's fandom. And so, Janey deserves her one taste.

As I write this, the music plays on. It burns, oh how it burns. But Janey loves it, and I love it that she loves it, even if I don't.

Sunday, May 20, 2012

Best Friends Forever

Janey's brother Freddy has always been one of her favorite people. If you believe anything about astrology, which I don't, it would make sense---they share a birthday, so all those newspaper "if you were born this day" personality blurbs would be the same for both of them. Before Janey's regression, when she was two, she often called Freddy her "best friend forever" I think her regression was harder on him than almost anyone. He went from having an adoring sister to a sister that barely noticed him.

Just lately, the Janey that adored Freddy is showing herself again. The way her face lights up when he plays with her is like nothing else. Tonight, Janey and I were in the back yard, and I called Freddy to come out if he wanted to. He did, and when Janey saw him, she said, without one bit of prompting, "Hi, Freddy!" If you know Janey, she is not big on spontaneous greetings, especially to family members. She then followed him around, with a look on her face that can only really be called hero worship. He gave her piggyback rides, he showed her his attempts at cartwheels, they played "I'm gonna get you" and "Hockey Pokey"---they had fun. Not just Janey, but Freddy too. Gradually, I am seeing more of this, and it is wonderful. I think Freddy and Janey both really do have a BFF for life in each other.

Second blog

I was hit by a fit of energy this morning, and decided to start a second blog. Once in a while, I do think about something besides autism, and I love to write, and just pretty much as an outlet for that, I wanted to have a place to write and to post pictures that don't have to do with autism, without boring people who want to read about autism and Janey! So in case anyone wants to check it out, here's the link...

On A Completely Unrelated Topic...

Friday, May 18, 2012

"I have a lot of angry"

Janey had an off and on day today, at least after school. We went to visit a friend of the family after school, and she was great at first, very happy, but gradually deteriorated and cried a fair amount, which she hasn't done in a while. Then she cried most of the way home, but I calmed her down at home, and she was okay for a while, but had another huge crying spell near bedtime. As I always do, I was asking her what was wrong as I comforted her. That's when she paused and talked in the way she does once in a very, very, very long time, in a different voice and tone than she usually uses. She said "I have (big pause) a lot of angry" Tony heard it too, and we were both taken aback. It was an original sentence, not a quote, and there was just that tone we so rarely hear. She sounded...regular. Not autistic. Like she was thinking about what she was saying, and not repeating a set phrase, and like she really wanted us to understand.

I hugged her and said we all get angry sometimes, and that she must often feel angry when we don't understand her. Then she quoted some from the Care Bears movie "Don't trouble yourself. We know one thing about people you care about. They always let you down" Those are lines from when the little orphans the Care Bears are trying to help reject their help. I couldn't help but wonder if she chose it on purpose to try to make a point. I said I was very sorry if I ever let her down, and trying to help her was never, ever trouble. I was probably way over her head by that point, but who knows? She is surprising me a lot lately, and maybe she really does understand a lot more than what she usually shows.

Thursday, May 17, 2012

33 ways most people are cooler than me

When they say their house is messy, they mean a few magazines hanging around, not HARD CORE messy.

They aren't afraid to fly.

They aren't afraid to drive on the highway.

They have a hair stylist---they would never cut their own hair and hope for the best.

They never run out of money at the end of a pay cycle.

They drive an SUV or a minivan.

They pick out a wardrobe, not just buy what looks okay at the thrift store.

They take vacations at resorts.

They don't let their pieced ears grow back.

They listen to music groups I've never heard of, and didn't say "who the heck is that?" when Adele won at the Grammies.

They go out with the girls for drinks.

They complain about how often youth soccer and baseball practices occur.

They know how to wrap presents prettily.

Their biggest thrill of the week isn't picking up books at the library.

They watch TV shows right the night they are on, so they can talk about them before everyone else is tired of them.

They have dogs, not cats.

They go to the Cape or New Hampshire on weekends.

They have a dental plan.

They like parties, not dread them.

They have handwriting that is legible.

They seem to get memos about the latest trends.

They belong to gyms.

They have a babysitter.

They grew up in a suburb, not a rural area.

They don't play video games ever.

They read best-sellers.

They don't let their kids eat or drink in the car.

They don't have allergies that make them sneeze and cough a lot.

They dye their hair and not let it be all gray.

They have lots of shoes.

They know how to put on make-up.

They know how to decorate and don't just put a lot of random stuff on their walls.

They are just cool. They don't TRY to be cool---they just are.

Okay, you are asking---what does this all have to do with autism? Not a whole lot. But it was prompted by an article that said something like "autism is currently the cool diagnosis" I thought---wow. I've never been cool. I'm not good at being cool. Is this autism gig finally my ticket to Cool Village? But is Janey the cool kind of autism? Am I treating her with the cool treatments? How can I use this all to my advantage to look cool when I want to? Is this going to overcome my tragic lack of fashion sense and make-up skills?

I'm not easily offended. I don't start crusades when I hear people using terms I don't like. But don't take the disorder that makes Janey's life so tough, that affects our whole family in hundreds of ways, that takes away so much from my precious girl's life and call it cool. That's not cool.

Tuesday, May 15, 2012

Socks and the Chips Store

Lately, I've been having an even harder time than I usually do finding matching socks for Janey. I swear I can buy 100 pairs of matched socks, and within weeks, I have 100 socks, none of which match each other. It's a mystery. But it's been getting worse and worse, and I think I figured out why. Janey keeps bringing me a couple socks and handing them to me. It's her way of saying "Let's get going!" She much prefers bare feet, and has figured out that when socks get put on her, it's time to go someplace.

And the place she wants to go all the time? The "Chips Store". The chips store is the CVS on the way to and from Janey's school. It's where we occasionally stop for Janey's treat---which is usually a can of Pringe's Salt and Vinegar Chips. It's something I'd do usually on a Friday, as an end of the week treat. Last week, because Janey asked so clearly and nicely, and because I needed something else there too, we went on something like a Tuesday. The next day, Janey again asked perfectly, saying something like "I want to go to the chips store. Can you say Please?" and I couldn't resist. Then a third day last week, I needed to pick up books at the library across from the CVS, so I told her if she was very, very good while I picked up the books (which she often is not---libraries bring out her urge to scream and throw things), we would go to the chips store. She was great in the library, so we went.

And of course, I've created a monster. She wakes up and the first thing she says to me is "Go to the chips store". She brings me socks, and sometimes for further emphasis, my pocketbook. She gets herself dressed as much as she can. She pulls out all the stops.

And that is fine, except I don't want her to have a can of chips a day. The medication she is on can cause weight gain, but hasn't in her at all yet. I worry about weight issues as Tony is an insulin-dependent diabetic, as are most all the members of his family. They have a hugely genetic form of Type 2 diabetes, which hits them hard. Despite all Tony's hard work, he is going to have to start having more shots a day and more testing. It's the auto-immune issue popping up again---my favorite autism theory. I have autoimmune thyroid disease, Freddy and I both have asthma, another auto-immune disorder---it pops up on both sides of the family all over.

I wish I could find something else Janey loves as much and is as motivated by as the chips store. She is not like some kids with autism, with huge obsessions with certain topics or foods or items, although she gets crushes on things for a while, like Funions or certain songs. But the chips store is showing me the power of her increasing ability to make connections and plans. She is thinking ahead---"I need socks on to go to the chips store". She is controlling her behavior---"I need to be quiet in the library if I want to go to the chips store" She is using speech to actually ask for the store. It's pretty cool to see. I wish they sold very small cans of Pringles---we'd go every day!

Sunday, May 13, 2012

Happy Mother's Day

I want to send out Mother's Day wishes to anyone reading this, whether you are a mother of your own children or not. If you care about children, you deserve a day.

It's been a very nice Mother's Day. Tony and I often joke about how bad some of my past MDs have been! It seems like everything always went wrong, or everyone was in an extra bad mood, or someone was sick. Today, everyone was happy and healthy. William surprised the heck out of me with special cupcakes he bought on his own from Rosie's Bakery, with the most delicious frosting I have ever tasted. Freddy made me a card with an assortment of photos and sweet words. Janey was cheery and said "Happy Mother's Day!" with a little prompting. Tony made me some French Onion Soup and gave me a big break. I spent most of the day reading sci-fi short stories.

I've been feeling a little more positive about mothering and autism lately, which you probably can guess is directly related to Janey's extended good mood. Yesterday, we went to some lawn sales with her, and had a sit-down lunch at Burger King--as fancy as we usually try with her. Just Tony, Janey and me, and it felt nice. We enjoyed seeing her enjoy the food, we put the little crown on her, we all ate well and laughed and enjoyed ourselves. In the middle of the meal, I was struck by something---that this was a preview of the rest of our life. The boys will move on and out, and although they will always hopefully be a huge part of my life, they will have their own life. And the unit left will be the three of us. On most days, that scares me, but yesterday, for a moment, it felt good to think about. I could see it working.

I will be a mother forever, like every mother, but unlike most mothers, I will probably be a hands-on, child at home mother forever. It's overwhelming, but for today, for a present to myself, I am going to think of the bright side of it. I always wanted to be a mother, and I always will be one.

Saturday, May 12, 2012

The blog debut of Janey on video!

Click here to see a video of Janey doing her part for her classroom publishing party!

The video shows a lot of the aspects of Janey's speech. There's some echolalia, and you can see how getting her to talk often requires a lot of prompting. When she does talk, she talks pretty clearly, although she has trouble with a few sounds I don't think show up here, like "th" sounds.

The video also illustrates how great her school is! You can hear how patient her teacher is, and see from the paper Janey is "reading" from how much they do to work with her. Her video clip was right in the middle of all the other kids' clips. That's how inclusion works---to the extent possible, and with accommodations, she does what the other students do. I am sure the students realize Janey is different, but they learn from a very early age that someone being different doesn't mean they aren't included.

Janey loves to see this video of herself! She has it down, her parts and the teacher's parts, and recites the whole thing!

Friday, May 11, 2012

J is for Janey

This is a picture of Janey's Mother's Day letter to me from school. Her special ed teacher told me this morning that she gave Janey choices in writing it for her, like asking her "Do you like listening to music with Mama or cooking with Mama?" and Janey answered her right away and nice and loudly and clearly, not whispering as she sometimes does lately. That was special enough to hear, but the "J" signature was a wonderful, wonderful surprise for me. I burst into tears of happiness when I saw it. I knew they had been working with Janey on writing a J as a signature, but to actually see it there---wow. There's something about it that is very symbolically special to me. It's like Janey saying "I am here! I did this!" I know I'll treasure that letter forever. Thank you, Jen and Christine!

Earlier in the day, Janey's class had a publishing party, where kids present their writing. It was done this year as a movie, which was very neat to see. It's amazing what kids accomplish during 1st grade. They go in not knowing how to read, and come out able to read and write. Of course, not Janey, but for some reason today, although I braced myself for it to bother me to see, it didn't at all. Janey was in the movie, and she did her best. She finished sentences about what she likes to do. All the kids did their best, and they all were amazing.

The best part of the movie was at the end. The whole class was dancing in a circle. Janey was right in there with them. She wasn't any different than any of the other kids, except for being (in my biased eyes, admittedly!) the best dancer. Then there was a shot of two other girls and her dancing. She was so, so happy, and the other girls looked happy to be with her. Janey was in her element---music and moving around. Those dancing scenes were inclusion at its best. Tony took a movie of the movie, and I will love seeing that scene for the rest of my life---Janey dancing with joy, part of the group but also her own amazing self.

Thursday, May 10, 2012

"Welcome to Holland" and autism

If you have anything to do with the special needs community, you have probably been given the "Welcome to Holland" story by some well-meaning person. On the off chance you don't know what I'm talking about, click here.

Usually, when I mention that story, I preface it with "stupid"---the stupid Holland story. I read it over this morning, and that is probably unfair. It's a very well done analogy, for some situations. I just don't think it applies well to autism.

Part of that is that you don't find out with autism right away that you aren't in Italy. You are handed a baby who in most cases seems perfect. It's like you are actually in Holland, but in some Disney type imitation of Italy. You THINK you are in Italy, you start seeing the sights of Italy, and gradually, you realize you're not actually in the real Italy. By that time, you've already made all kinds of Italy plans, restaurants and sights and sounds you are going to see.

The other part is that I feel autism isn't another country. It's not an alternative life. It's the same life, with something taken away. Here, I am talking about lower functioning autism, as Janey has. I know with high functioning autism or Aspergers, there are many people who live wonderful lives---lives outside the mainstream, but very happy and meaningful lives. But I can't help but feel in Janey's case, autism has taken away what she was meant to have. There are wonderful things about Janey, but I think she would have those traits without the autism. She would still be musical, but she might be headed to a career in music. She would still be quirky, but able to explore the varied ideas and thoughts her quirkiness lead her to. Autism hasn't taken us to a different but equal country. It's taken away. I can't accept that a life where Janey cries for hours because she can't explain what is bothering her, where she will most likely never experience the joys of love and marriage and a family, where everything will always be a struggle, is just a different but equal vacation in Holland.

Yes, our personal mis-booked vacation has lead us to meet some wonderful people. It's opened my eyes to a world I wouldn't otherwise have found. But all in all, I find the Holland story as applied to autism to be paternalistic and condescending. It's above all a story about a parent's viewpoint. From Janey's viewpoint, I'm pretty sure if she could say, she'd want to go to Italy if that is where she was booked to go. She'd want the life that most of us take for granted.

Wednesday, May 9, 2012

There IS progress...

Sometimes it feels like Janey isn't making progress at all, but lately, I've been thinking about the ways she really is progressing. The ways can be subtle and hard to notice, but they are there.

Reports from school lately are encouraging! Mr. Ken, her ABA specialist, told me this morning he's going to start adding more names to a list where Janey finds her own name, as she's getting better at it, and her special ed teacher wrote yesterday that Janey was doing some great letter identifying! I love hearing things like that.

At home, the big thing I've noticed is how much better Janey listens and follows what we say than she used to. I can tell her "close the fridge and bring me a spoon, and then I will give you ice cream" and she'll do all I have asked, if she's motivated. She will pick up on little parts of what we say. I told Tony the other day I was going to take a shower, and Janey loves to have a shower now and then. She managed a sentence that was original to let us know that---I can't remember it exactly, but it was something like "I want have a shower now"

She also shows good planning very often. She knows what has to be done first before she gets what she wants. Last night, she was very eager to go outside, but was in her nightgown getting ready for bed. She went and found some pants, and put them on, and came to us and said "You want to go outside" Pronoun reversal and all, it was great, although we still didn't go out. This morning, she had a notion it would be fun to stop at the chip store on the way to school. I wasn't getting her ready as quickly as she thought I should, so she went and found two socks and brought them to me. They were unmatched, as our socks often are, but I was impressed she knew she needed socks, and also that she understood numbers well enough to know she needed two. We still didn't stop for chips!

The negative part of me looks at all this and says---yeah, she's seven. She can do things that would be fairly normal for a two year old. But the positive part of me knows they are progress, they are steps that are necessary for her to work her way (and our way) toward things being slightly easier for her.

Some of it, the feeling of progress, can't be captured well in words. She just seems somewhat more self-possessed, somewhat more aware of herself and of the world. Not always---sometimes she still seems completely unconnected to us or anyone else, but fairly often. She is looking older, and acting a little older. I am very proud of her. Nothing comes easily to her, or almost nothing. It's all work, and I need to keep looking for signs that her efforts and ours and the schools are working. It helps to keep us all encouraged.

Sunday, May 6, 2012

Hard to read --- lost to wandering

I happened upon this article the other day, and despite trying hard to stop reading it so I would stop crying, I couldn't. I read all the stories of autistic children lost to wandering. It's a very, very scary thing. I was struck by the fact many of the children were 7, and it made me think that it's a tough age for autism. Janey is developing her own will, and wanting to do her own things, and she is starting to attempt to "elope", as I have heard it often termed. Thankfully, her successful attempts have been very few so far. But several times she has made it into the cellar, and one horrible time she got away from Tony as a drug store and went to the car by herself. He watches her like a hawk, but it takes one second of distraction. It happened once at school, under the watch of a teacher I would truly trust with my life. And lately her special ed teacher has reported she's been running in the courtyard where they have recess. The school was designed in the 50s, but it was like it was designed for autistic kids, as recess is in a huge courtyard in the middle of the donut shaped school, so running isn't as serious as it would be, but they have worked out a game to work on it---yelling "STOP" after letting her run, or Janey and one teacher running while the other yells stop. We are all aware how vital the lessons about eloping are.

And yet it can happen. My heart broke reading those stories. Many of them were spurred by a child's obsession, often with water. You combine a child that can get obsessed with something like no-one on earth, a parent that might have gone nights without sleep, and you have a recipe for disaster. Your eyes close sometimes when you haven't slept. Or you succumb to the temptation to take a second for yourself. You start reading that interesting article on the internet, or looking at a bird or tree while you're outside. And your child is attracted to something, and slips away. Parents and teachers of autistic kids are being asked to be superhuman. No one person can do it. That's where my post yesterday comes in. The need to respite, for support, is not so the parents can sit around eating bon-bons. Many times, while Janey is at school, I sleep. I do the laundry I can't do when I am with her, as it's in the cellar. I talk to my boys. I pay bills. All things other parents do, but things I literally can't do unless someone else is watching Janey. It's why I love school, and after-school. They save my life, and possibly Janey's life. It's also why anyone working with autistic kids deserves our utmost respect, the pay they have earned and their own respite too.

This is a bit of a rambling post. My mind doesn't stay organized when thinking about my biggest fears.

Saturday, May 5, 2012

Direct Services---that's what autism needs!

This article is something I happened upon, and it made me wish I lived in Jacksonville! I just recently figured out the term for what I think is desperately needed---direct services. If I am correct, it means services that directly aid children with autism---not money for research, not money for awareness or walks for some small portion of the "cause", but real services---respite, recreation, camps, after school programs, buddy services, sports opportunities, things like that. I am so lucky that Janey is in a great school with a great after-school program, but I still wish for more. Janey loved the Irish Step lessons she gets at afterschool. I wish she could go to more lessons---real swimming lessons, not just an open pool, a day camp, gymnastics lessons, all kinds of things. Things that "regular" kids can do.

The other part of this is that I think there's a lot available I have no idea how to find, or that is available only to certain richer communities, or certain religions. A wonderful resource would be a person (or guidebook or website) that brought together all the actual direct services out there. I think sometimes places that have a program avoid advertising it too much, for fear of being overwhelmed. I can get that, in a way, but on the other hand, it bothers me, if only in that is shows how desperately such programs are needed.

And there's the question of quality. I never want to put anyone or anything down here, so I won't get specific, but one sports opportunity we tried just wasn't safe. Janey was repeatedly being assaulted---pushed over and hit--- by a boy bigger than her, also autistic. I don't blame the boy. He wasn't being supervised, by his father or by the staff. And they were frankly overwhelmed. It was a mess, and we decided to just stop going. I don't think most families would tolerate that kind of situation for their "regular" kids, and I see no reason they should for their autistic kids either.

I am so lucky in what Janey does get to have at school and afterschool that sometimes I feel like I'm being greedy in wishing she was able to get more, and maybe for right now, she is getting enough. But she won't always be at her school, although barring miracles, she'll always be autistic, and there are many, many kids like her. I hope that some of the wonderful giving that people do to help autism will get directed to programs that will directly serve our great kids!

Thursday, May 3, 2012

When to talk, how to answer

Janey and I spend about an hour a day together in the car, drive to and from her school. These are nice hours, usually---we listen to a lot of music, and Janey generally enjoys the ride. But she rarely talks, and I was thinking today about how I handle that. On the ride in, we seem to have settled on music, but on the way home, when she's often tired, she sometimes fusses if I put on music. So I talk. I talk to her, about anything I can think of to talk about. I ask her about her day, and if she saw people I think she saw, or did things I think she did. I tell her about what we will do that night. I tell her I missed her while she was at school, and talk about her brothers, and Daddy, and the cats. I sometimes recite stories. I sing a little. In short, I prattle on and on. And she doesn't answer. She rarely, rarely responds to a thing I say. She does listen, I know, because if I ask her to do something, like hand me a cracker or stop kicking me, she responds, usually. If I say something she especially likes or doesn't like, she might react. But in general, she's just quiet. Does this kind of talking do any good, or would I be better off just being quiet? Sometimes, when I am tired or the driving is challenging, I shut up for a while, and she doesn't seem to mind one way or the other. It's a hard part of being her mother. Sometimes I feel like a one-person show playing to a very non-responsive audience.

And then there's the times she does talk, by asking for something over and over that simply isn't in the car. Tonight, it was "cheese cutter". She asked for cheese about 15 times on the way home. The first time, I answer fully "We can't have cheese cutter in the car. There is no cheese in the car. Cheese needs the fridge. We don't have a fridge in the car. We can have cheese at home". The next time, a shorter answer "No, not in the car. Cheese is for at home" Gradually, it becomes "No, Janey. I told you no." And none of it seems to matter. I think she does understand, but it's hard to say. She just really, really wants cheese, and something in her tells her to just keep asking. It can be very frustrating. I love to have her talk, and I throw that in now and then "It's nice you are using your words to ask, but I can't make there be cheese in the car". Sometimes she tosses out a "PLEASE!" By the time we were home tonight, I was getting a little snappy about the cheese.

And so we have a couple of the very, very many situations where I'm at sea---where I'm never sure what is best to do. Do I talk on, when I don't get answers? Do I answer on, when the question has been long since answered? Does it really make any difference? I'll keep trying, making it up as I go along and hoping for the best.

Wednesday, May 2, 2012

Knock on Wood

Janey has been in a good mood for a week and a half now, knock on wood. It started when she went back to school after vacation, and it's been great. She's cried very little and has just seemed to enjoy life a lot. As I've said before, when she is happy, it all seems very manageable.

A friend asked me if she's been talking a lot since she's been in the happy mood. That was a good question, as that's sometimes the case, but not this time. I think often when she talks the most is when she's feeling a little manic. This is more of a calm happy. I do think this is when she learns the most, though. She is calm enough and receptive enough to be taking everything in, although she might not show what she's learned.

The last few rides home from school have been so nice. Two nights ago, Janey said "Do you want to go to the CVS chips store?" which of course means "I want to get chips at the CVS" She rarely talks to me at all on the way home, and I love it when she does. She also asks at the right time, before we are passed the store. She's always very aware of where we are in our drive, which is not the case with her older brother Freddy! I asked "Do you want Pringle chips or Dorito chips?" and she answered right away "Pringle Chips!". However, at the store she saw the Doritos first and changed her mind. I reminded her we don't eat the chips until we are in the car, and she was such a good waiting girl, even when we were in a long line with all kinds of people in front of us that seemed to be using ATMs to pay for the first time in their life. I just felt so proud of her behavior and happy to be having fun with her, getting her a treat.

Last night she thought she'd try again and asked again for a chips stop. I thought that was probably a bit much, so I suggested a stop for ice cream. She didn't answer right away, and I asked "Strawberry Ice Cream YES, or Strawberry Ice Cream NO?" That sometimes works, not often, but after about two minutes I heard her pipe up "Strawberry Ice Cream YES!" She was such a delight getting the ice cream, so excited and happy and well behaved. I had her tell the owner what she wanted, and she said "ice cream!" She ate the bowl completely.

So, among the days that are tough, there are good days. I love it when Janey and I can just have fun together. On days like that, I truly am not a bit bothered by her delays, or by her general autism. It's funny---before you have kids, there's the classic thing that you say "As long as they are healthy" which I think usually really means "as long as they are normal, as long as they are intelligent, as long as they aren't slow" And when you are given a child that isn't those things, you change. You see people getting worked up over their child having trouble with algebra, or not making some special team, or not being on track for a top college, and it just seems...well, silly. And I don't like to say things like that, as I do understand those feelings. But on the other hand, Janey makes me see that just a happy day getting a treat can be all you'd ever want being a parent to be.