Monday, December 19, 2011

The reality of progress

As I sat down to write this post, I thought about this morning. It seemed in my mind to be a good morning. Then I reviewed Janey's behavior. She woke at 5, as she almost always does, asking for videos. When bored at one point with them, she decided to play in the cat litter, which luckily we caught quickly. She peed on the floor a bit after that, all over the place. And just before my hands hit the keyboard, she dropped a piece of cheese she was done with in my coffee. But the mind's editor had edited out that background noise, the everyday autism stuff, and concentrated on the progress. It's how we stay sane.

When I used to like to read books about children with autism (which I don't do, now, but before having my own example, I found fascinating), there would always seem to be a point where the child did something amazing---said a long sentence, showed empathy, created a master work of art, "passed" for normal in a classroom---and the book would end there. It would seem to me like from that point on, things would be great. If they could do that amazing thing, the autism would fade into the background.

The reality is that the progress is wonderful, encouraging, fantastic, but it doesn't create a glorious end of story moment. The autism is still there.

Janey really has been making wonderful progress lately, and I am thrilled about it. I had her IEP meeting last week, and as always with her amazing team, it was an uplifting time. I am almost moved to tears every time I think about how many people at Janey's school love her, care about her, want the best for her, work hard for her. I never, ever take it for granted. I heard great things about Janey---how much more she is greeting people, how she is often recognizing her name, how the other kids love her. I heard the cutest story of all time about her. When her special ed teacher asked her, as Janey gazed at her, "What do you want?" Janey answered "I want to wish you a Merry Christmas!" And then they sang the song together. I heard so many positive things. But of course we all also agreed that Janey still needs to be supervised closely every single second, for her safety. That amid all the progress, the fact remains she doesn't know most of her letters, she can't write, she speaks mostly in 2-3 word simple sentences, she can count but not really meaningfully, she is inconsistant even about the things she knows well. None of that bothers me much. But it stays there, in the background.

Yesterday was a great day. We visited my sister and her son and his girlfriend. Janey learned the girlfriend's name right away, and used it well. At one point when she was crying, she said one of her longest sentences to me "I am upset because I want to go home". (she didn't really that much, but at that moment she did!) She was good in the car, something quite new. She ever did a classic pesky younger sister bit. Freddy was trying to practice his declamation, to recite a poem in class today. Every time he started to recite it to us, Janey starting reciting from a video, in a loud voice. This happened about 5 times. Then Freddy was quiet for quite a while, and so was Janey---not a word. As soon as Freddy started reciting again, she did too, in a loud monotone. She was driving him crazy, and she knew it! Even Freddy had to laugh and feel a little proud.

And yet, she can't do so many things that are special for this time of year. She has no clue what asking for something for Christmas means. She can't anticipate Christmas---she doesn't have the necessary knowledge for that. I am not a huge Christmas gift giver, but there are special things her brothers want, and I know they will be excited to get. I never have any idea what to get Janey. I will probably go with some Funonions, her favorite snack. I know she'll be happy with that. But I'd love to have her asking for the latest hot toy. Yet, she love the tree. And she adores Christmas songs, as the story above speaks to. I am very lucky to be able to enjoy the progress, to see the cute and fascinating things she does.

And so it goes on. It's reality. Reality doesn't end with a breakthrough moment. It's lifelong. We can thrill in the moments along the way, and stumble on, living our real life.

Sunday, December 11, 2011

More thoughts on apps and autism

Many thoughts have been whirling around in my mind as I watch Janey interact with the iPad. A big one is---I think a lot of people don't get what drives kids with autism. There are two big traits that I think most kids with autism have, or at least that Janey has. One is a love of predictability over novelty---a lack of curiostiy. The other is a lack of motivation to do anything just to please others. In creating an app that really appeals to kids with autism, I think these have to be kept in mind. Janey isn't going to keep trying something just to see what happens. Many apps depend on this---the reward is getting to a new level, seeing or trying something new. This doesn't appeal to Janey. The reward needs to be something she can predict, but still likes. A good example of an app that works for her is called First Words Christmas (and there are other First Words apps too). You move letters into a word---for example, in "tree", the word tree is written, and the letters in tree are scattered about, and you have to overlay the "t" on the "t" in tree. When all letters are in place, a little music plays and the tree picture moves around. To me, it seems like a pretty boring reward, but Janey loves it. She loves the predictable routine, and the mild reward. Another good part of this app is once you finish one screen, it moves automatically to the next. Even if Janey is enjoying something, if given a chance, she might hit that very tempting menu button and go back to the general menu, if the next activity isn't put up there fast.

This has made me think about the possible overdiagnosis of autism, and the difference between having some cognitive delays and having autism with cognitive delays. If Janey was just delayed without the autism, a lot more apps might appeal to her. She might like the ones that allowed creativity, the ones I download in vain, drawing ones and sticker ones and the like. The curiosity and enjoyment of the free form would draw her in, and she would learn from them. But with autism and the delays, you lose that crucial piece. She has little curiosity. She likes her fun to be fun she's expecting.

I use a trick of quickly showing her apps she might like, and playing them a little in front of her, while she physically tries to move my hands. Then I go to the menu and click on the icon a few times, just to show her how to get there. This makes the app familiar to her, and once in a while, she goes back to it.

Janey got hung up on an app called Starfall Snowman. Starfall ABC is one of her favorite apps, and a great one. I thought she might try the Snowman app, which allows you to make a snowman and then hear a little story with your snowman featured. She liked it, but for a different reason. She'd hit "make a snowman" and then right away hit the X button to exit, and the app would say "Goodbye!" in a voice she loved for some reason. She would do this over and over and over for an hour, just to hear the Goodbye. I decided to delete the app, as she wasn't doing anything else on the iPad and I frankly couldn't stand it any more. The next time she went to play on the pad, she coudln't find the icon, and searched and searched in vain. It was so bad that she had to ask. She said "I want snowman game". I couldn't resist that, and put it back. I then sat there while she played it for about another hour, over and over. A few times, she hit something else by mistake, and very, very gradually, she started to try those other things. It taught me a lesson---I have to let her sometimes discover things on her own, and she will, just not at a normal pace. She doesn't watch the exact same videos every day, she doesn't eat the exact same foods. She does try new things, but very gradually, and I need to respect that.

Overall, it's been a good month or so for Janey. It was hard for me, as Tony went away on business for two weeks, but we all handled it, and it's great to have him back. I think for the first time in quite a few, I feel hopeful about Janey's progress. She is learning at school and at home, in her own extremely quirky way. It's good to see.

Thursday, December 1, 2011

iPad update and sleep talk

Overall, I would say the iPad is a success. Janey really likes it, and that is something huge. It's very rare that she likes any object enough to actually request it and use it, except videos. I put lots of apps on, so she would have a greater chance of finding some she liked. Her favorite probably is called "Interactive Alphabet". It has an interactive picture for each letter, and is easy to navigate. The pictures engage her, especially a jack-in-the-box and a robot. She also likes Make It Pop, which has popcorn, balloons, bubbles and fireworks you can make pop. The popcorn counts as you pop it, the balloons have letters in them, etc. Both of these illustrate what is hard to find in apps. There are many great learning and special needs apps out there, but most of them require an element that Janey just doesn't have---a desire to learn new things. They might reward you with some little sound or picture for doing what is asked, but it's no-where near enough to make Janey choose to spend time with them. It's what always confuses me. It seems like many people developing programs for autism just don't get that part of autism, or Janey's form of it. She is not eager to please, or eager to learn, or eager to get to the next level. She likes what she likes, and she will do the same thing over and over until she masters it. A good app will have to sneak in learning, or have a built-in reward that is big enough to make her interested.

The other thing that has bothered me a bit is how expensive some of the autism related apps are. The "regular" kid ones are 1-3 dollars, mostly, but a lot of the autism ones are more like 20-200 dollars. It's something I've noticed so much---"special" toys and apps and programs cost so much more than "regular" ones. Is it a prerequisite to have a lot of money if you have an autistic child? Or does someone like taking advantage of how desperate a lot of special needs parents are?

The best thing about the iPad so far is how it calms Janey down when she is screaming and crying. Four or five times, I've brought it over to her in the middle of a fit and started playing it myself. She is interested enough to stop crying and play. That's worth the cost, right there.

And the sleeping? It's something I need to get a handle on. Night before last, Janey went to sleep about 7 and woke at 1am, and never slept the rest of the night. My husband was away on business, so it was all me, and it was hell. It's a special kind of torture to have to stay awake when you are desperately tired, because if you don't watch your child, they will wreck the house and hurt themselves somehow. I napped a lot during the day, and reports were she actually had a good day at school despite the lack of sleep. Her need for sleep is not normal. Some days, she sleeps a HUGE amount, others, very little, and she doesn't seem affected by either the way you would expect. It's an example of internal factors affecting her more than external ones, as often seems to be the case. If she is manic, she just doesn't need the sleep, and us wanting her to sleep makes no difference. I don't know how single parents do it. If you know a single parent with a special needs child, you will be doing your hugely good deed for the year if you can give them a little respite, or even just let them know how hard it must be for them.

Thursday, November 24, 2011

Happy Thanksgiving

I want to say Happy Thanksgiving to anyone reading this, and an extra-extreme Happy Thanksgiving to the other autism/special needs parents out there. My brothers and sisters in lifestyle---you probably understand how bittersweet holidays can be, even one like Thanksgiving, where it is not all about kids being expected to act in certain ways. I am so thankful for Janey, for having her, for her beauty and grace and how unique she is. I am not thankful for how hard her life is now, and how hard it will be in the future. I am not thankful she is going to have to struggle her whole life to be understood, to do things that the rest of us take for granted. I am VERY thankful for the people out there who love her---the family and friends and teachers and staff who care for her. And the students---the amazing students in her room at school who accept her. I am not thankful for how hard life with Janey can be sometimes. It doesn't take a holiday---we had many meltdowns today, diaper incidents, just as many tough times as any day. I am not thankful for the ways autism (not Janey, but Janey's autism) makes life so difficult so much of the time. So bittersweet. I should be more just plain sweet today, but more and more, I am striving to be just plain honest, not just plain sweet. I can say, though, I am thankful for Janey. Not for all her diagnoses, not for all her behaviors, not for the diaper incidents or the crying, but for Janey herself. For the wonderful little girl she is, despite all she has to deal with internally and externally. And I am thankful for you all, my fellow travelers on the slow boat to Holland, to quote another parent. Despite the differences we might have in views and opinions and approaches, we are all in this together. Thank you.

Tuesday, November 22, 2011

iPad

I thought I'd update some on the iPad, as there is so much hype out there. I feel like it's the first big autism "cure" type trend I'm in the middle of. Of course, no-one is saying it's a cure, but it sometimes feels that way. I think that's why I resisted getting one.

So far, it's fair to middling with Janey. She loves the Starfall app. I'm sure that's because she's used it a lot at school, and so there are no surprises there. What impresses me is how well she can navigate it. I didn't realize she would be that skilled at moving from screen to screen, and getting back to where she wants to be. Mostly, she wants to see the same screen numerous times, and to do that, you have to go to the next screen and then back, or restart the program. So she's learned to do that with ease. It makes me a little hopeful about her future use of technology. She does "get" it in some ways.

However, I put lots of other apps on there (it's amazing how many great things you can get for a dollar or two) and she has little interest in them so far. I'm trying hard not to push them. I try to remind myself that she doesn't interact with things the same way I do. I'd be driven to try each one, to see what each one did, but she doesn't have that urge. And if I try to direct her, it either makes her less interested or doesn't affect her at all. I guess in some ways, that's like all kids. So I am trying to casually play with apps I think she might like, without talking or comment, to spark her interest.

It's an amazing piece of technology, but it's not the miracle devise for autism people want to think, at least for Janey. It does seem to work well with the way she likes to interact with things, and it is teaching her computer use skills. I can see her using more apps on it in the future, hopefully. I'm not sorry we got it, but in some ways, it can be depressing to try something that gets so much hype. It's the history of autism treatment, I think. It's because Janey and kids like her do have those strange, compelling moments of clarity, the splinter skills, the times when they are fleetingly so "normal". Even though I know very well otherwise, sometimes I can't help but be taken in by the wish that we will find the right key and unlock the "normal" Janey. And of course there isn't one. What there is is my own Janey, my beautiful mysterious girl.

Sunday, November 20, 2011

Cheerier, and no miracles

Janey got out of her last crying spell fairly quickly. I'd say it lasted a week, and by last Friday, she was very, very cheerful---not manic, but cheery, smiling, talking---great. This weekend was terrific too.

Tony and I thought and thought and discussed and discussed and finally decided to get Janey an iPad, with the only respite money we've ever gotten from the state. We got a one time $500 last summer, and I had saved it thinking I might use it for the iPad, and then had pretty much decided not to, and then with all the 60 Minutes buzz, we decided to get it. It came down to it being worth a shot---that we figured it couldn't hurt, and we didn't want that money frittered away on small things for her. So we bit the bullet and bought one. I spent a long time looking up apps that would be good. I was a little surprised that the main communication app that was shown on 60 minutes costs in the hundreds of dollars. I can't afford that. But there are quite a few free apps, or ones that cost 1 or 2 dollars. I got both autism apps and toddler apps, as Janey functions at about a toddler level in terms of computers.

There's not going to be any miracles for her with the iPad, I know. She likes it okay, and from using it at school, can find her apps on it, open them and sort of run them. But interactivity is not her thing. She likes to watch passively. I didn't put any books that get read to you or videos on, on purpose, but the main thing she's done so far is go to Starfall, which she uses at school, pick the K and have it play a kangaroo hopping over and over and over and over again. I guess there's skill there---she must know what the K is, but it has no real usefulness---I don't think she could find a K in another context. She also likes a game called Fish School, where just by touching fish they rearrange themselves into the letters. What she REALLY loves is hitting the button that makes you back to the menu, and then rapidly hitting the app button she likes, so going back and forth between the menu and the app over and over. I got the program I saw on 60 minutes, to have her touch pictures of objects to see her receptive vocabulary, and when she was motivated feeling, she did very well. She knows lots of words, like "robot", "remote control", "harp" that she would never say, at least when she has 3 pictures to pick from.

And what is missing here is the desire to really communicate. The kids on the show that used the iPad well WANTED to communicate. Janey gets by, with her few words and her actions, and I don't think she has a strong desire to interact more than she does. I might be wrong. But I think that her mind just isn't terribly set up to want interaction with others most of the time. She likes people that she likes, she is not adverse to others being around, but she isn't dying to tell us all kinds of feelings or desires. I have no idea how to change that. I have no idea how to motivate her, none at all. Her motivation is at the level of finding that "K" to see the kangaroo, but she doesn't have the curiousity that would lead her to see what would happen with the M or the R. If I showed them to her, she might like them, and try them again, but there's no push to find out more. She doesn't want to please us, not that she wants to DISplease us, she just wants to live her life the way that feels like contentment to her. It's frustrating. But how can I change it?

Anyway, it's great she's been happy. It's great to see her smile. And who I am to judge what makes her happy, just because it's not exactly moving her forward?

Thursday, November 17, 2011

The crying is back!

The last week has seen the return of the crying. It's the hardest part of Janey's autism for me, and whenever it goes away, as it did for most of the early fall, I hope it will never return, but it does. Imagine a crying that starts literally when Janey wakes up, and continues off and on (during some periods, almost all on) all day long. It's very, very tough. During these times, Janey seems to talk less, and when you do get her to talk, she really has no idea what she wants or why she is sad. Believe me, we have tried. When we do the trick of starting the sentence for her "I want....", she will fill in one of about four responses---baba, Kipper, Angelina or snuggle on Mama's bed. None of those are usually what she really wants. Any of them might make her stop crying for a few minutes, but no long term. If we try "I am crying because...." and then offer choices "I am sad", "I am angry", "I feel sick", "I am bored", she will usually pick I am sad or I am angry, but I really don't think she gets the meaning of those words. Change of scenery is hit or miss. She likes the car for a little bit, but not for long. She cheers up at the idea of going to school, but cries at school a lot too, from all reports. It seems like it's just a storm that has to pass. Usually, within a week, she is better. She will be "regular" for a while, and then, after a while, the mania period hits, where she doesn't sleep, she giggles insanely all day and she is just generally hyped up.

They don't diagnose manic-depression in children any more. They don't think it really occurs in children. So okay. We won't call it that. But it's cyclical, it's severe, there seems to be nothing to be done about it. It's heartbreaking. I feel guilty every day taking her to school, knowing she will cry there. But she'll cry just as much if not probably a lot more at home. She is occupied at school, and it gives me some time to gather myself together. I still feel guilty. I feel like when she is being tough, she is all mine to handle. When she's just autistic, or just delayed, I feel okay having more people enjoy her and teach her and appreciate her, but when she's crying or angry, I feel like it should be only me (or only me and Tony) working to keep her happy. And I have to let go of that, or go insane.

To be fair, this is far from the worst crying period she has. The crying is not all day. It is truly off and on. She wakes up crying, but she had a lot of time yesterday when she wasn't crying at all, and that is what was reported from school, too. Maybe that should be a hopeful sign. Maybe, as she gets older, these crying spells will be milder. Or maybe not. Tony thinks sometimes she's sad because she is becoming aware she is different than other kids, that she can't talk like them or learn like them. I don't think she's at that level yet, but it's possible. It would be hard to say.

I hope this current crying cycle is nearing its end. Hope springs eternal, so when it's over, I'll hope it never comes back, but reality tells me it will, and dealing with cycles like this is something we need to learn to do. If there is a sunny side to all of this, Tony and I were saying how it makes us realize that regular autism is nothing, regular retardation is nothing. If she were happy, we could pretty much care less if she is showing a lot of autistic behaviors, or talking very little. That's selfish to say---of course I want those things for her, but if they aren't meant to be, they aren't meant to be, and we can handle that. But when it's those plus unhappiness, it feels sometimes like we have been chosen for some special kind of torture, as has Janey. I try to end on an upbeat note when I post, but I'll be true to myself and not falsely be upbeat here.

Tuesday, November 15, 2011

Janey and the dogs


My sister had a copy of the picture I'd been looking for, showing Janey with 4 big dogs. We were at my cousin's house in Washington, during our big trip, and the whole trip, Janey was deeply in love with dogs. My aunt had a wonderful old Rhodesian Ridgeback, Gidget, and Janey loved her so much. It's part of why it's so perplexing to me that she has such a horrible phobia of dogs now.

Thinking about the dogs on that trip always makes me think about how the trip affected Janey. We drove cross country to Olympia, Washington. 6 days out and 6 days back, 9 days there. It was a wonderful trip, a dream come true for me. The boys and Tony loved it too. And mostly, at the time, Janey seemed to enjoy it. She turned 3 during the trip. Now, looking back, we date her autism starting to the trip. Before we left, I have to say she was showing a few small signs, and I was first starting to have questions. She started preschool a week or so after we got back, and within a few weeks, her talking pretty much ended. I always wonder if there could have been a connection. She spent long hours in her carseat, but she was next to Freddy, and we are talkers---there was certainly almost no time that she wasn't surrounded by conversation. But could she have gotten a blood clot from all the sitting? She wasn't sick on the trip, I don't remember any day during it she acted radically different, but in a way, the non-autistic Janey left us somewhere around the time of that trip.

I resist thinking about Janey before the autism. I try to convince myself often she really wasn't okay, even then. But then I think about how she was in Early Intervention all those 3 years, because of her severe physical delays, and no-one once suspected autism, and those were professionals trained to see it. I remember the last time the PT saw her, and Janey was totally discharged from EI. We laughed about how at least we knew she didn't have speech issues. It breaks my heart to think of that, sometimes. We have videos of Janey talking. I watched part of one, once. I suddenly screamed during it, a scream that I didn't even recognize as myself. I turned it off and told Tony I never wanted to see it again.

This is why although I don't think vaccines caused Janey's autism in any way (she had none anywhere near the time of her regression), I can understand very well how people that believe that did cause their children's autism feel. If she HAD had a vaccine at that time, it would be very hard not to associate it with the horrible regression.

I do think Janey always had the seeds of autism. She talked, she was social, but when I am really thinking about it, she was always a little bit something hard to define. She talked more to me than to anyone else, and there were friends of mine who had rarely heard her talk. I remember thinking when she was 2 or so that her words were like bubbles---beautiful and perfect, but when she wasn't talking, it was hard to picture that she could. But it was nothing like afterward, or like now.

So, like the Janey that loved dogs, that Janey isn't here any more. We have a Janey, and I thank everything there is to thank for that. I do miss my other Janey sometimes, though.

Monday, November 7, 2011

The Patience of Job

So you want to get in on the latest hot trend in parenting, being the parent of an autistic child? Congratulations! You're in for a world of excitement! However, there are a few traits you might want to make sure you possess before you give it a whirl. Today's trait---PATIENCE!

Let's use a little illustration, shall we? Perhaps from my own life? Okay Dokey! Today, Janey woke at 1 am! She had some fun requests---mainly "Barney!" The one Barney she likes to watch over and over and over and over---Barney's Top 20 Countdown, which is just 20 of his "best" songs. It doesn't even have the fun parts in the middle of trying to figure out why parents would leave their kids at some kind of day care where the only supervision seems to be a stuffed dinosaur that sometimes comes to life. It's just the pure songs, which are now carved in my mind for life. As much as it's a good time, I felt I wasn't quite ready for it at that time of morning, and so said "No, Janey, it's still nighttime. See? It's dark out. We will watch Barney in the morning". Well, Janey felt otherwise. So she kept asking for 2 hours, while I was half asleep. I would have actually given in at many points, but I was so darn tired I kept falling back asleep, only to be woken up by her kicking me or jumping on me and saying "Barney!". At 3 I decided Tony had slept enough, and woke him up to take over. He put Barney on, which of course only worked for a few minutes. But instead of falling back asleep, as she sometimes does, she stayed awake to think of other demands---"I want a baba! I want cheese cutter! I want cabbage! I want Kipper! I want take a bath! I want TV off (which means on)! I want snuggle on Mama's bed! (which always sounds hopeful but really just means she wants to wake me back up to see if I will be more responsive to her requests)" And all of this is paired with her manic style laughter, which is back. It comes back every couple months, along with the sleeplessness.

Tony was a saint, being very calm at all times. When I finally gave up on sleeping, about 5, I tried to be too. I've been gritting my teeth and being patient all morning. We had a bath, we put on Barney, I made a baba. Just now Janey came over and wanted ice cream. I said no. She is currently screaming her lungs out, kicking my chair, and if she knew more curse words, I'm sure she would be cursing me.

It's 8am. We leave for school in 30 minutes. I am hanging on for that. She likes school a lot better than home lately. I should say this upsets me, but it really doesn't. It makes me happy. I'm glad she has a school like that. One of the big differences at school, though, is there is more than one adult to deal with her. Here, there is just me right now, and soon, when Tony has to go away on business, there will be just me for weeks. I will be drawing on every ounce of patience I have. Sometimes, I bet I half would appear lobotomized to people watching me deal with her. I have to push down the emotions, answer cheerily but firmly, keep going and doing my everyday life stuff as well as trying my darn best to figure out what she needs and how to keep her happy, or at least not sad, or not crazily manic.

So, prospective autism parents, work on patience! Just to be on the safe side, if you are thinking of becoming a parent at all, work on patience! It's needed for all kids, but if you hit the autism jackpot and get an autistic model child, you will need it in spades.

Saturday, October 29, 2011

60 Minutes iPad segment

The segment on 60 Minutes about autistic people using iPads seems to be generating a huge buzz lately. I finally watched it yesterday. A few reflections....

I really felt for the man with autism who had been using a piece of paper, pointing to letters, to communicate. It does seem there have been things out there for a few years that would work better than that, but it was wonderful to see him using the iPad. He was obviously ready for it.

I was less sure about the kids shown. A few of them reminded me of Janey. She uses an iPad a little at school, and I asked her teacher if she thought I should get her one. She said to wait a while and she could tell me better, which I appreciate. Janey is not really ready to fully use the language type program shown on the segment, but I liked a few things I saw there a lot---the emotions app, the vocabulary app, etc. I have a feeling Janey could be like the boys shown who didn't talk much at all but was able to identify all kinds of vocabulary words. I'd love to see Janey use that particular program. She did something similar with a language test one time---pointed to words I had no idea she knew, like "castle" and "squirrel". But I could also see her just getting obsessed with the button that takes you back to the menu. We'd have to cover it somehow.

I hope iPads don't become the next big thing in autism---the thing that is supposed to fix everything, like taking dairy out of the diet, using ABA, the bad old days of Facilitated Communication, etc. As the segment correctly pointed out, they aren't going to be something every autistic kid is interested in. And it will be annoying if for years, people assume somehow autism has been "cured" by iPads.

I still think I might get an iPad for Janey, if I can afford it. It's something that wouldn't be a waste of money, because if she has no interest in, I sure would, or Tony, or the boys. That's a nice thing---that it's not some piece of equipment that is very specific. Janey is attracted to my iPod Touch, which might be a good sign.

And a last reflection---the expense. I'll find a way to get an iPad, if I need to, I'll go into debt or whatever more than we already are. But there are many autistic kids out there with no way to get one, and I'm sure there are many kids in school systems where they will never be given one to use at school, either (Janey's school use is on a shared one). I wish everyone who wrote about their autistic child considered the money issue. I can't say how many autism books I've read by people who seem to have unlimited funds, and never mention that many people could not dream of setting up home ABA programs or doing horse therapy or moving to some other country or being in the "right" school distract. I hope if somehow I ever get more money, I will use it to help kids with autism that don't have many resources. Thank you, Doug Flutie---he's someone doing exactly what I would try to do, if I could.

Tuesday, October 25, 2011

A glimpse at another Janey

Yesterday when I went to pick up Janey at after-school, she was out in the courtyard. I went out to call her in, and saw something that will stay in my mind forever, I think. She was playing ball with a group of kids. They were throwing basketballs and chasing after them---a kind of modified soccer. Nothing formal, the kid of recess game kids play. And Janey was playing with them, completely with them. They weren't "including" her, she was completely like all of them. She ran when they ran, laughed in a non-manic, non-autistic way, was red in the face from the running, happy and coordinated and PART OF THE GROUP. I stood there like in a trance. It was like I had somehow entered a parallel universe, the "normal" Janey universe. She was graceful and athletic---much more so than either of her brothers would have been in a similar situation. She was just another little girl playing.

And then of course the over-thinking took over. I questioned myself as to why I was so overwhelmed and happy with what I saw. I felt guilty---do I wish the other Janey, the real Janey, away? Do I just give lip service to celebrating her uniqueness---do I really just want her to be normal? And of course, a little, I do. Autism is hard. It's hard for us, it's hard for her. But I think there was something else there.

I thought about my proudest moments with the boys. They are moments when they did something I could never do---when they showed me who they were. With William, it was seeing him play guitar and sing on stage. With Freddy, it was seeing him act. They are the moments when you realize they are amazing people in their own right, not because you made them that way. And that was what this moment with Janey was like. I couldn't be part of a sports moment like that. No way on earth. The boys couldn't either. I've never seen either of them at ease playing sports. It's not them. But it's Janey. We've always realized she got the gift of being athletic that shows up very rarely and randomly in both our families, like red hair showing up from some long ago ancestor. It's completely apart from her autism. And that was the gift of what I saw. I saw a Janey that wasn't labeled, a Janey that wasn't a special ed student, or a medical mystery, or a case. It was just Janey, doing something she was good at. And I'll never forget it.

Friday, October 21, 2011

This and That

It's been a semi-smooth period with Janey. She had about a week of off and on crying days, which seems like a year when it's happening, but which was a lot shorter and less intense than in the Bed Old Days. She is loving school, really loving it, and I love her classroom and her teachers. I met with her special ed teacher today, and was so happy with everything she is doing. I like her goals and her approaches. She really seems to understand Janey, and to agree with me about what it's important for her to learn and what isn't. I like her regular ed teacher very much too. I think Janey was ready for 1st grade---the slightly more structured setup seems to agree with her. She is still learning very slowly, at least the things we try to teach her, like to recognize her name, but that is how she learns.

Tonight we saw her increased computer skills at work. She was annoyed we were watching The Office when she felt it was her time to watch something, so she went to the computer, hit the Start button, found Dr. Seuss' ABCs, clicked on it to start it, and picked "Let Me Play". Freddy and I saw the whole sequence. We have seen the results of such computer work before, but never quite caught her in the act and saw how easily she does it. She watched YouTube like a pro, clicking on the pictures of the video she wants to see next. But those are things she is very motivated to do. If she were motivated to writer letters, or read her name, I think she could, but I don't know how to motivate her for those.

I continue to try to figure out her speech. One thing I've noticed is that instead of using the word she must have heard much more often than the wrong work, if the wrong word is one she figured out herself, that's what she uses. For example, she calls cheese "cutter" as she sees us use a knife to cut it (and cutter itself is a word she worked out). She calls towels "scarves". When she gets out of the tub, she yells out "I want scarf!" I guess a scarf goes around you and keeps you warm, like a towel. But whey does the wrong word persist? I think it has to do with her having to think very hard for anything but rote speech. She has to think "What's that thing that keeps me warm?" and if the first word like that she comes up with is scarf, she goes with it. The other day in the car, she was playing with a necklace and got it caught in her hair. It was a rare time when she had to communicate verbally and quickly---I think she could tell I couldn't see her when I was driving, and she needed specific help. She let out a hodgepodge of words "Pull out my hair! I want necklace! Pull my hair!" She didn't know how to say "The necklace is stuck in my hair!", but what she said was effective.

Not to write about myself, which is not the purpose here, but I had an odd thing happen today, and it made me wonder if Janey ever has similar happenings. I was shopping at my favorite thrift shop, but had an odd feeling in my eye, like I had looked at the sun a bit too long. However, it didn't go away with closing my eye or waiting a bit---it got worse. It was like an outline of a circle that blinked, and has rainbow colors, just on the left side. It kept getting bigger and bigger until it was the whole left side of my sight. I could see other things behind it, but it was very hard to concentrate. And scary, until I realized what it was, a migraine aura. I do get migraines, but I've never had an aura before. And I never did get the migraine, or that WAS the migraine. I researched it and saw when you get that without the headache, it's called a optical migraine. The descriptions and even the artist's pictures of it were exactly like mine. I wonder if Janey gets sights like that, the times she pulls at her eyes. Or if she gets auditory auras, which might be the famous "clicking sound" or "banging sound" she's mentioned during some of her lowest times. I never realized a visual disturbance was that vivid. I thought it was vague, but this was bright and extremely disturbing. Janey would have no way to explain something like that, and it would be terrifying or at least very confusing. I need to research whether there is any connection between migraines and autism.

Anyway, for now, 7 is a good year for Janey. She just seems, most of the time, a little more comfortable in her skin, a little more "home" more of the time. Knock on wood.

Wednesday, October 12, 2011

Detective Work and Phobias

Life with Janey involves a lot of detective work. She doesn't give us a lot of clues about why she is feeling the way she feels, or why she does the things she does. She was in a wonderful mood for several weeks, and then Monday she fell part. She falls apart spectacularly, with a day full of screaming and tantrums. I've got a couple theories about why. It was Columbus Day, and there was no school. I think she has a counter in her head, although she doesn't seem to consciously get numbers, but I think she knew it was Day Three of the weekend, and that was just plain wrong. She was supposed to be in school, and she wasn't. I also took her to Kohls to shop for clothes. That is something I have almost never done. I'm not a shopper, and if I do shop, I don't bring her along, but this particular time, the circumstances fell together and I had to. She didn't enjoy it, to say the least. She made her half crying-half laughing sound the whole time we were in the store, she got on the floor several times for screaming fits, she put on her extremely angry face a few times and yelled---it was pure joy, let me tell you. Nothing as fun as lots of people staring at you. I always want to say "Have you NEVER seen a kid with autism or retardation before? There's lots of them out there, you know! Sorry I had to expose you to such horror!" Of course, that's just mean, because most of the people are not trying to be rude, but I wish they'd smile at me, or look away more quickly, or something.

After searching for reasons for the Monday Meltdown, we moved on to Tuesday, with school, and a happy Janey. After school, I took her for ice cream, and while we were walking down the street, all of a sudden she stopped short and curled up in almost a fetal position. I thought she had hurt herself somehow, but then realized the problem was a dog being walked toward us. Tony had mentioned she is scared of dogs now, but it was the first time I'd seen the extent of it. She was TERRIFIED. Terrified to the point she couldn't even cry---she was barely breathing. I talked reassuringly as much as I could "That's a nice doggie. It's not going to hurt us. It's on a leash. It's a sweet doggie!" (which it did seem like). But she didn't relax until the dog was past us. We saw two more dogs on the short walk back and forth to the shop, and both times, the reaction was the same---absolutely frozen terror. I don't know where she got that. She used to LOVE dogs, to an amazing extent. I tried this morning to find a picture I have of her surrounded by four Rhodesian Ridgebacks, which are HUGE dogs, extremely happy just to be with them, when she had just turned 3. I wonder if it's a good sign, almost---her awareness of what's around her is growing, and she is noticing dogs. That might be another piece of evidence to look for when she is upset----a dog outside barking? A dog on TV? Even a dog just mentioned?

I'll say this---Janey keeps my mind active. You can't coast as her mother. You have to be on alert always, figuring her out. I don't think I'll ever get her completely, but I have to keep trying.

Sunday, October 9, 2011

Is there sadness?

I recently read a blog post by a man who had written a book about his autistic son. He was responding to someone who said his book was too positive, that it was impossible that he could be without sadness or regret about his son. I haven't read the book, although I plan to, but the question and his response struck me. He said he really hadn't felt sadness or regret. I must say that's incredible, and I can't say the same, but I can understand some of what he was saying.

I do feel sadness about Janey a lot. Some of it is for her, and some of it is for me. I feel sad about the things she might not ever be able to do. One of the biggest of those is reading. I love to read. Reading is a huge part of my life, probably my biggest pleasure outside my family. I can't even imagine a life without reading. So that makes me sad. I feel very sad she might not be able to marry and have children. As a woman, that has been the best part of my life. I feel sad she may never have a best friend, never have a love affair, never go to college, never live on her own. I know there are people that live happy lives without ever doing any of those things, but I think most people would agree they are a big part of life, and I have sadness she won't (probably) do them.

And I feel sad, sorry, for myself. I probably won't be by her side as she gets married, or has a baby that will be my grandchild. I won't be able to guide her through the excitement of a first crush, or introduce her to my favorite books. I don't get the fun of having other kids ask her over to their house, which is a main way mothers socialize with each other, also. She isn't into collecting Littlest Pet Shops, or American Girl dolls, or Barbies. That might seem like a silly thing to regret, but I do. I looked forward to sharing things like that with a daughter, things I like and wanted to do with a daughter. Of course, there were no guarantees any of those things would happen with any daughter. But still, I will be honest and say that those things make me sad solely for myself.

But I can honestly, honestly say that there are many unique joys Janey brings me that are special to her, that might not be the case with the other, imaginary daughter I don't have. Janey loves me without reservation. There isn't the tension many mothers and daughters have, and there probably won't ever be. I don't say about Janey what parents often say, and what I have come to see is truly a hard part of parenting "They grow up so fast!". Janey grows up slowly. We get to enjoy each stage, and look forward to each new one, without them all rushing by. I appreciate her beauty, which seems shallow, but I do. I like being able to dress her, and to be honest, it's kind of fun that she usually lets me have her wear what I want to have her wear. I love her unfettered joy in the things she loves---how hearing a song she likes or seeing a show she likes or eating food she likes can make her so happy she dances around the room. I like snuggling her as she falls asleep. I like her quirks, sometimes---the odd little things she loves and enjoys, like Kipper or raw onion or Christmas carols. I love so many things about her.

So---yes, there is sadness. I wouldn't lie and say there wasn't. But there is happiness, too. That is the case with all children, I am sure, but I am pretty sure the sadness is often more with a child with special needs. That doesn't mean we don't love them as much as it's possible to love them---maybe even more than we would without the balancing sadness.

Wednesday, October 5, 2011

Wow! What is it?

Today after school, as we were walking to our car, I told Janey I had a treat for her in the car. She said "Wow! What is it?" And that, my friends, was one of the best moments of my life so far. To have Janey casually say that, a totally appropriate response, in a completely "regular" tone of voice, was nothing short of a miracle to me. She has NEVER EVER said anything like that before. I don't think she's ever asked me a true question before, to say nothing of one about something that "normal" to want to know. It was fantastic. I was able to tell her special ed. teacher right away, as we were passing her, and she understood what a breakthrough it was, and said they had been working on that kind of question.

That capped off a few great days. Janey has been cheerful, talkative, just a lot of fun to be with. School is going extremely well. She seems eager to go each day, and happy when I pick her up. She is happy at afterschool, so much so the principal took pictures of how happy she was and sent them to me, which I very much appreciated! Both her teachers seem to get her, and care for her, and want her to do her best. I know enough not to take that for granted, from so many other parents I have heard from, but in my own life, that kind of teaching has been the norm, and I am very lucky for that.

I'm always unsure exactly what causes things to go well, just as I am unsure what causes them to go badly. I think a little success breeds more success. A few other moments lately have been making me think about how important even a little communication ability is. In the CVS the other day, Janey picked out a big bag of Funions (the crispy onion things) and wanted them. She was so cute with it I had to get them, although they are not really a food stable I like. But it made me think how that's the very thing of it---if she hadn't been able to get it across to me she wanted them (in this case by picking them up and handing them to me) I never would have gotten them, or realized she even liked them. She would be more subject than she already is to my guesses as to what she likes, which I am sure are often wrong. The other day, she wanted to watch Kipper on Netflix. She can say "I want Kipper" well, but not the episode she wants. Sometimes she quotes a line from the one she wants, and we guess, but more often, we put on the wrong one and she throws a fit, and we all get frustrated. This time, she said, slowly and a bit painfully as she often says new things "Head in a box". We had no clue at first---it sounded a little horror-filled. Then we looked at the little pictures that go with each episode, and one showed Arnold, Kipper's little pig friend, with his head poking out of a box---part of a magic trick Kipper does to him. It was exactly what Janey said---a head in a box. Tony and I looked at each other in amazement, and put on the episode. Who knows how long that had been the one Janey wanted to see?

It makes me happy she is learning how to ask for things she wants, but it also makes me a little sad, thinking of how often she can't, and of the many, many other kids out there that can't share what they are thinking or what they want.

A PS to this one---Tony just came over and hugged me, and Janey said "Give me a hug too!" Another amazing thing to hear.

Thursday, September 29, 2011

Fold the Sparkly Bracelet

One of the mysteries of Janey is her speech. I am always trying to figure out what makes it work and not work. She has never completely lost speech, although she came close after her big regression, where for months she only said "I want a baba". But her speech comes and goes. It is not on a steady upward path. There were times in the past when she talked a lot more than now, and times when she talked less. Lately, her usual speech is a request of 1-3 words. I'd say 80% of what she says starts with "I want a ...." or just plain the name of what she wants---"Kipper", "Chocolate Bunny", "Ketchup". Then there's the echolalia, which is long, long sentences from her vidoes, which sometimes relate to what is going on. The other day, after a severe diaper incident, she said "I'm terribly, terribly sorry". A line from Angelina Ballerina, but I didn't mind it.

One thing I've been noticing a lot lately is her inability to retrieve the right words. When she wants to say something that she doesn't have in her mind as a script, she very often doesn't know the words to use, and substitutes others. A few recent examples----I put ponytails in her hair, which she has decided she doesn't like. She started pulling at the elastics and screaming, and then looked at me and said "Bracelet! Bracelet!" I figured out she meant elastic---and that she probably got the name from seeing me sometimes put them around my wrist before putting them on her or on me. Creative, but it would confuse people who didn't get the reference. Then, that same day later, I told her we could get a donut after school. She was excited. I asked her what kind she wanted, chocolate or plain, and she said "Sparkly!" I knew what she meant---one with sprinkles. I actually loved that! We went and I got her a strawberry frosted with sprinkles, and the look on her face was priceless. She seemed so thrilled to be understood. It made me a little sad thinking of all the things she can't explain that she wants. The next day, we were in the bathroom and the window there was open a bit, which she doesn't like at all. She pointed to it and said "Fold! Fold!" which I figured out meant "Close it!" But why fold, which seems like a less common word to me than close? I don't know. Today, in the same situation, she said "Turn it off!" I said "You want me to CLOSE IT?" saying the close and it in a long way, to emphasize them, but that doesn't seem to be how she learns words. Just now, as I was writing this, she came over and said "Take off the bracelet", this time meaning a clip that was in her hair. Maybe bracelet just means any adornment? I think linguists could have a lot of fun trying to figure out just how the language section of her brain works.

Tuesday, September 27, 2011

The Night Siege

It's one in the morning. Janey wakes up, and as always, comes to me. She wakes me up and says "Baby Einstein!". I say "It's nighttime now. We don't watch videos at night. We sleep at night. Snuggle down next to me and let's sleep". Janey says again, in a louder voice "BABY EINSTEIN". I repeat my lines. Janey kicks me. I tell her to stop and go to sleep. Variations of this repeat for a while, then she wakes up Tony. He says what I have said. We both lay down with her between us. She kicks up both, screams "I WANT BABY EINSTEIN!". She tries a little variation, by doing what is so often done to her, modeling the correct response "I say...YES!" We repeat tiredly the lines about it being nighttime, time to go to sleep. We then try ignoring. That only makes her more determined to get her point across. Several times she attempts to get up and put on the DVD herself. We bring her back to bed. It is now 2:30am. Tony has to get up for work at 4:30. I have to drive Freddy to the bus at 6. We both are at the point where tired doesn't even begin to describe it. Janey is wide awake, with the one thought in her mind. We look at each other, and wordlessly, Tony gets up and puts on Baby Einstein. Janey delightedly watches it for a few minutes, and then goes to sleep. She sleeps until 6:30, when she gets back up and asks for, yes indeed, Baby Einstein.

Now from Janey's point of view, as best as I can figure it. Janey wakes up. It is dark, and she isn't next to Mama. She gets up to go to Mama. In her mind, the Baby Einstein video is playing. But she needs to see it, to refresh her memory of some certain part, to tickle her brain, to scratch the mental itch which is bothering her. She doesn't have distraction techniques. When she wants Baby Einstein, she wants only that. She uses her words, as she has been taught, to tell Mama what she wants. Mama doesn't answer right. Mama must not get how important this is. She asks again. Mama again is saying no. Mama must not understand the question. She will tell Mama how to answer "I say...YES!" Mama laughs a little at that, and still says no. She decides Daddy might be the one to ask. He says no too. Meanwhile that need to see Baby Einstein is getting worse and worse. Mama and Daddy keep talking about dark, and sleep, and tired. Those words don't mean much. They are missing the essential point, that Baby Einstein must be watched. They tell her to sleep. But it's impossible to sleep. Time goes by---some hazy amount of time, and finally they see the light and put on the DVD. Janey sees what she needs to see. Her mind is quieted. She goes to sleep.

What lessons are learned here? I have very little idea. I've learned, over and over and over, that regular parenting techniques don't work on autistic kids, usually. They don't want to please you. They don't always feel tired in the night. They don't have the ability to shut off thoughts, or replace them with other thoughts. Often, there is a voice in my head telling me the "right" thing to do. "Don't give in to her! You need to stand firm!". But there is my body, saying I must sleep at all costs, Tony needs to get sleep before he goes driving on 128 at 5am. WE HAVE TO SLEEP. What good did the hour and a half siege do? No good. Janey didn't learn a lesson. Other times, when it was perhaps the weekend and we needed to get to sleep less, we've outlasted her. It has taken sometimes up to 6 hours. And she sleeps for a few hours, wakes and is in a terrible mood, and wants the same thing she wanted when she went to sleep.

And we have other kids, and jobs, and other parts of our lives. What I think of collectively as "The Books" and "The Experts" might say we should never have given in. But those books and experts always seem to deal in isolation---there is only the autistic child. There is no need to sleep, no older kids that need rides or forms signed or attention. No jobs. They also assume autistic minds are like regular minds in some core ways that I don't think they are. Janey doesn't seem to learn from the past as other kids do. She was not thinking "Gee, they don't seem very happy I woke them up. They aren't putting on my video. I should just go to sleep and not try this again". She is thinking one thing, and one thing only "BABY EINSTEIN".

And so another day in a half dream state, barely awake. Janey, as always seems to be the case, is bright and awake and shows no effects of lack of sleep. And so we go on.

Thursday, September 22, 2011

An eye-opening experience

Yesterday, when I took Janey to school, I saw a tour bus parked outside the school. I thought perhaps some class was going on a field trip, although it seemed kind of early in the year for that. As I was waiting with Janey outside the school, I saw what was up. A big crowd of people with nametags were also waiting outside the school. They were speaking what I think to be a Nordic language, as they all looked pretty Nordic. They had tags on that said "Harvard Graduate School of Education" I figured out (I'm pretty quick on the uptake!) that they were there for a tour of the school.

The time while I waited with them all right next to Janey and me was a little surreal. I think I understand how zoo animals feel now! I'm not saying that in a mean way or saying I minded them being there at all, because I didn't, but it did feel a good deal like the kids were on display, based on how many of the people were taking pictures, and waving as you would to a animal in a cage, without talking to the kids (although they might not have spoken English). Janey was putting on a good show for them, being very autistic acting, and they watched her as well as some children who use wheelchairs or walkers, and some kids with Down Syndrome and various other special needs.

The reason I talk about this is that the whole experience made me realize anew how unusual Janey's school is. The fact that people would come from other countries to see it (and that has happened other times, just not quite so big a crowd) makes me see that what is happening at the Henderson School isn't happening a lot of places. It's true inclusion. I think a lot of schools say they have inclusion, but they are more like the school I looked at briefly for Janey, where the principal asked me anxiously "Does she follow classroom routines?" They don't take EVERYONE. They take kids who will fit in fairly well, the easy kids. Janey's school takes everyone, everyone that can get in, that is. And they take their brothers and sisters, too, so the children aren't isolated.

But does inclusion work? I am not always sure. I do feel sure it's a model that should be aimed for, but I am not always sure how it works for Janey specifically, or for the other kids in her classes. Janey is upset a good deal of the time---crying, making sad noises, being loud in her unhappiness. This is I am sure hard for any classroom teacher. She also has a very tough time learning academic things. I'm basing that on this being her 5th year in school, and I can't name much of anything she's learned, academically. She's learned social skills, she's been loved and cared for and has made progress in ways that can't be measured, but she hasn't learned letters or numbers or writing or colors too well, or reading or math or science. Is this because of inclusion---because she is always in a classroom that is moving too fast for her, that is full of talk she doesn't understand? Would she do better if the other kids were at her level? Her classes have always had a special ed teacher in them, who modifies the curriculum for her, but she is not their only student, and the other 4 or 5 kids they help have significant needs too. It's a question I just can't answer. I haven't had a lot of luck teaching Janey skills at home either. She learns some things very easily. She knows each of her DVDs and tapes by sight, she's figured out pretty much how to navigate the complicated series of buttons and remotes we have, she knows the name of every type of food she's ever had, including things like cabbage, she learns songs easily---but she doesn't seem able at this point to learn to write letters, or recognize them.

Aside from that, yesterday reminded me how lucky I am. To have Janey in a school that is internationally known---just pretty much by chance, because we live in the right city and the right zone and Freddy got in there by lottery years ago---that's luck.

Sunday, September 18, 2011

Start of the year

Start of the school year, that is, which seems like the start of the year for students and parents. And how's it going? Pretty well, for Janey. I feel like a grinch when I say to people that the beginning of the year always goes well for her, as if I am waiting for it to stop going well, and I'm not. I hope it goes well all year long. Janey is in 1st grade, in a great classroom with wonderful teachers. She has a desk. The desks are pushed into tables, and she is right there in the thick of it. She seems very, very excited in the mornings before school, and is cheerful when I pick her up, if tired. The surprising thing at the beginning of the year was her hugging spree. She isn't much of a hugger, but I think she was truly happy to see people she knew from other years. The best was when she hugged her friend Michael, who is in 5th grade and who she has known since she was a baby. It was totally spontaneous---we were just standing there before school and she went over and hugged him. His mother and I both got misty-eyed, I think. She hugged several teachers and therapists, too, and said to her PT therapist "I want to ride the bike" which is something they do together.

At home, she's been fairly happy too, but in a not-sleeping-so-well phase. The last few nights have been okay, so hopefully it's ending. I think the start of the year had her so hyped up she was waking in the night excited about it, and staying up for hours. It's the hardest thing. You can deal with almost anything, if you get sleep.

Her reaction to the year starting was making me think about her traits that have nothing to do with autism. She is like her brothers in her liking of school. They would recoil in horror if I ever breathed the words "Home Schooling". They want to be out there, seeing people and part of the crowd, and Janey does too. She likes the routine. She's not shy. Her brothers aren't either. It still makes me marvel, and wonder where they get it. I don't think that is part of the autism---it's part of her underlying personality. I like seeing it come through.

Wednesday, September 7, 2011

One of those days

Yesterday was most certainly one of those days. It was one of the longest days I've had with Janey. She started the day off with a diaper incident, which required a huge cleaning job. Then assorted battles over keeping her clothes on, keeping her out of the fridge, keeping her from creating her own interesting food combinations like ketchup on grapes, keeping her for another new hobby of eating cardboard and paper---you know, lots of your basic fun. Then another diaper incident. By that point we'd had two baths. We kept things lively with a third diaper incident shortly after that, followed by another bath, at which point I bribed William with an offer of take-out for dinner to watch her for an hour because I'd been up since 4 and needed a nap. Then back up, at wit's end, took her outside to play with water for a while, which would have been fun had it not started pouring at that point. We stayed outside for a while in that, but finally it was too much water fun even for us. Back in, Tony got home around 5 and thank goodness took her out for a while as he got William school supplies. He came home with the promised take-out, and we settled down for a fun family night of watching our DVD set of "The Middle", a show we are all enjoying, that is, except Janey. She decided in the middle of it she wanted to watch Hello Kitty. We almost always give in, because once she decides something like that, it's no fun to keep watching what you are watching anyway. But we were all tired, and in need of humor, and decided to just say no. Well, she didn't take to that well. She first just threw quite a few standard fits---screaming as loud as possible, getting in our faces with barred teeth, etc. We resisted. Then she went for the DVD player. I was surprised she realized what we were watching was a DVD---that smart girl. And surprised she knew which was the eject button. She ejected the DVD, and SHE was surprised when we put it right back in and found our place and kept watching. She decided to go raid the fridge, which was bungee corded shut and she couldn't open it, so she contented herself with opening it the inch that she could, and slamming it back shut, for about 10 minutes. We had put the DVD on such a loud setting that we were still able to hear through all this. When she got tired of banging, she went back to screaming, at one point hollering "THIS IS NO FUN AT ALL!" which is a line from The Cat in the Hat. Finally, the show was over. We put on her Hello Kitty, which of course she had no real interest in. And that was that.

It made me realize how rarely we completely say no to her. It just isn't worth the bother, most of the time. There are so few things she knows how to ask for, and we have so many things that we can do for entertainment, that it seems fair to usually let her have the ones she can ask for, and we just do something else. But this time, we all very much needed some family laughter, and we just decided, without discussion, that we were going to get it. Was it worth it? Probably not. I can't say we got much out of that last episode we watched. But I have two children besides Janey. Sometimes, I think it's important for them to see they can get their way, too. 99 times out of 100, they are giving it to Janey, because they are older and they are not autistic. But they are still kids, for a while more, and this time, it was their turn, and our turn. And I wish life wasn't like this most all the time in our house. I'm worn out. I'm more than worn out.

Thursday, September 1, 2011

Toys

I love toy stores, and I love getting interesting toys for my kids. However, I've found over the years that the toys I like to get are not always the toys the kids like to play with. I've bought about a million blocks since I've been a parent, and they have barely been touched. I've bought several beginner baby video game type systems for Janey, all of which overwhelm her. I've gotten her many dolls, most of which end up as chew toys. William was the easiest to buy for---anything Thomas the Tank Engine or Brio got heavy, heavy use. Freddy always preferred electronic entertainment. Janey---well, it's very hard to get her interested in a toy at all.

What has worked? The best kind of toys for her seem to be what are called fidget toys. They are ones you can hold and move around in your hands---things like squshy balls, Tangles, stress balls, textured baby type toys, things like that. She also likes musical toys---ones with buttons to push to play music. She has always been interested in Play-Doh, and I'd very much love to get her everything Play-Doh that exists, but she eats it, always. Yesterday was a little bit of a breakthrough in that she found some I had hidden and actually played with it for about 15 minutes without putting it in her mouth at all, so maybe that is getting better. She rolled it into a log and a ball, making me very happy. Lately also she likes pouring water or beans or something from one container into another.

The thing that's hard to do is not think age-appropriate, but much lower than her chronological ages. It's so tempting to me to get her things I would like her to like, like Polly Pockets or Barbies or dollhouses. I have to tell myself that she might like them some day, maybe even into her teens or twenties, but right now, the best kind of toy for her is probably aimed at about a 1 year old, and there are lots of neat toys out there for that age.

I've searched a lot for web resources for autistic kids and toys. As I often find, most are aimed at higher functioning kids than Janey. Lots of Thomas, lots of games that she would in no way understand. It seems like someone recommends a toy for autistic kids, and then that just gets copied by everyone, whether most autistic kids would like it or not. I'd love it if there were a site just for lower functioning kids with autism, with toys they can't choke on, that will actually hold their interest. I see some great things sometimes in school or therapy catalogs, but they are priced for those kind of budgets, not mine. Another cool thing I'd like is if some autism agency would lend good toys, like a toy library for autism. I'd be happy to pay a monthly fee to have access to some of the great toys I can't afford. It would be another of those services that would help people like Janey much, much more than another grant for research.

Meanwhile, I'll just continue limping along getting the occasional toy that's a hit with her. I think toys are a huge, huge part of childhood, and it's one of my biggest frustrations about autism parenting---that there is so little to give her that will engage and interest her.

Friday, August 26, 2011

The Summer Report

I'm awake in the middle of the night, so I figured I'd take advantage of my time and do a post, rather than my usual word game frenzy.

How was the summer? Well, better than others. Mostly I credit that to "Summertime School". It was a huge, huge help to have a block in the middle of the day where Janey was cared for and active, and I could relax, catch up on work and have time with the boys. The school wasn't perfect--the facilities, as I have written, were not good at all, and I don't think there was enough support in terms of things like the kids having places to play outside or equipment for the classroom. But Janey was happy and safe. The teacher and aides cared for her, and the fellow students were a good mix. Three of them were kids from Janey's regular class, which provides nice continuity. It was air-conditioned, and Janey has happy to go each day. The experience is an illustration of how HUGELY helpful respite and support are. Although it worked out to only about 4 hours a day, it made all the difference in terms of how the days went.

In terms of progress, it's mixed. Lately we are seeing some good talking bits---nothing huge, nothing that we'd probably even notice if it were not Janey. But little things. The other day, I was making idle conversation with Janey as I do all the time, and said "Are you looking at Polly (the cat)?" and she said, just as easy as pie, "Yes". That was huge. She doesn't answer like that. It was great to hear. And that same day, she said "Freddy! I need a blanket!" I've never heard her call for someone's attention like that before she spoke to them. She's also added a few words onto her standard phrases. Instead of just saying "I want salsa" or anything else, she says "I want salsa NOW!" I guess she got tired of us slowpokes. However, behavior-wise, it's been tough at times. The whole getting into things problem is much worse. Janey is taller, and more determined. We have had to bungee cord closed almost everything in the house, and still, she finds ways to get into things. The other day, it was tea bags---she ripped them open and threw the tea around. She loves to pour a glass of liquid all the over the floor. When she is in a mood, she will take whatever food is offered her and toss it on the ground and step on it. And we have had several, well, pull-up content disasters lately. Nothing seems to work to stop this kind of behavior. I have no idea how to stop it. I try filling the house with sensory things she can play with instead, we try time out, we try reasoning, we try ignoring, we have resorted to yelling at times----nothing has the slightest impact. And she is so fast. We never, ever leave her alone in a room, but she dashes into the next room and does her best pretty much instantly. I think she plans it out.

Her birthday, turning 7, was hard for me, harder this year than I remember. Every year she gets older is hard, because it's another year she's behind. But I have to celebrate her birthdays, too. She is so beautiful, so perfect in so many ways. She has her own personality, she is her own special place in the family. As long as I don't compare, as long as she is just Janey, not someone to be held up against other 7 year olds, I can take it. I can be proud of her. I love her without reservations, without limits. I just hope we can find a place for her in the world outside.

Saturday, August 13, 2011

Article I liked

I just read this article

http://childrenshospitalblog.org/our-patients-stories-recognizing-miracles-in-everyday-life/#more-13865

and really liked it. It said well something I've thought about a lot lately. I would really like to know exactly what is going on with Janey. Does she have more than autism? Why is it so hard for her to learn, even in ways other autistic kids seem to be able to learn? And I don't to know this to look for a miracle cure---I want to learn it to be able to plan, and understand. I want to know what to look for in the future, what kind of education would be best for her, what kind of care she will need for the rest of her life. Someone telling me that would like a wonderful thing, not a miracle, but a wonderful thing.

It's been interesting watching Janey this summer in "summertime school", as we call it. And a little sad, but not all sad. For the first time, she is in a class with all kids with special needs. I don't know what all of their special needs are, but it's obviously she is behind all of them. They are connected, they do puzzles and draw pictures and even write. They know me, and screaming "There is Jane's mother!" Whereas Jane, although she is happy and well cared for and loved there, isn't learning, because she just doesn't learn well. If not totally directed, she stands around, lately spending a great deal of time looking at her hands. At home, most all of her speech now is quotes from "Angelina Ballerina". She often seems less connected than she used to be even. She just sits quietly. She is happy most of the time, but an unconnected happy.

If this is how she is, and this is how she is going to be, so be it. I can accept it. I really can. I've been looking at older kids at the summer school, and I see it's not a bad life. They seem happy. They are not aware of their limitations. They do their own thing, and seem to enjoy their own thing. It's okay. But what if there is something I should be doing---if I am not doing the right thing? I haven't felt that way for a while. Maybe it's because it's almost her birthday. Every year, her birthday gets a little more bittersweet. She is going to 7. Mentally, she's around 2. Maybe less in some areas, more in perhaps words she knows but doesn't use. She's not toilet trained, she talks very little except to ask for things in a basic way or quote videos. She more and more often makes odd noises when we are out, a kind of "awawawaw" noise that sets her apart. She still sometimes runs from me. The years are going by, and not much is changing. And I have probably, in some ways, reached the acceptance stage. She is who she is. If I were sure that was it, I'd be fine. But I'm not sure. What if I had always insisted on many hours a week of ABA, although I've never seen it do much for her? What if I worked with her myself all day every day, intensely? What if I believed Jenny McCarthy, and did what she said? (not going to happen) What if it's somehow my fault, for not doing enough? Or doing too much, or not doing what I was doing right? A million people could tell me it's not my fault, but I don't believe it, in the deepest part of myself.

Wednesday, July 27, 2011

How's it going?

Well, for Janey, better than expected. She is happy going to "summertime school". She seems to look forward to it, and almost always seems calm and in a good mood when I pick her up. The teachers and aides are sweet and seem to love her, and her classmates seem like a good mix. There are about 7-8 kids each day, all boys except Janey and one girl from her class during the regular year (who is head and shoulders ahead of the other kids academically). I think it works for Janey because it's pretty low key---she can move around the room, she has breakfast and lunch and snacks and takes a lot of walks inside and outside. The day is pretty short, essentially 10-2. I don't think she will learn a lot, but that is often the case whether a lot is being taught or not. She is getting some socialization. I am still not happy with the facilities, but I have come a little to terms with it. It's how it is---there's not a lot I can do, except send in some toys and books for the room, which I have done.

For me, not as great. Summer is never easy for me, and I've been feeling quite down this summer, more than most, probably. Partly it's just the same things as always, but I think each year it gets a little harder as Janey gets older. I think somewhere, somehow, even though I'd tell you otherwise, I thought she'd "grow out" of a lot of things. Maybe because William changed so radically, maybe because although I outwardly scoff at a lot I read, I do know some kids with autism do get better. Janey isn't. Her talking is steady, with maybe a touch more responsiveness but still tons and tons of delayed echolalia. She spends long periods of time lately looking at her hands, which she hadn't done in a while and which I hate to see. She can be very content just being held while holding a blanket and twisting it around---calm times for us, but not a sign of a lot of progress. The toilet training has tiny hints of progress, but yesterday again was a horrible smearing diaper around incident. And I don't see what I can do to change things. I guess I can't change things. I know that, I knew that all along, but it's still hard. And I know my own personality, which tends toward lethargy and mild depression, doesn't help. Our extremely, extremely tight money situation doesn't help---we are at the point this summer of going almost no-place unnecessary, to save money for the essentials like food and the pile of bills. I am letting things like ebay working and laundry get ahead of me, while I am tired---always tired. I do have a physical coming up, and maybe my thyroid isn't good, or my blood pressure medication needs changing, or the asthma is worse (allergies have been awful), but I tend to never allow myself to think of the problem as physical---I blame myself, not my body.

And yet, these are wonderful years. I am seeing my boys grow into men, I am seeing my beautiful girl grow up. We have times when we all laugh until we cry. I can't see these years as bad years. They are tough years, and hopefully, some years will be easier, but they are important years, the core years of our life as a family. I need to always remember that.

Thursday, July 14, 2011

Feeling angry

Summer school is still making Janey happy, and I am happy with her teacher and aides. What I am not happy with is the way the school system is allocating resources to the children.

Janey's class now has about 9 kids. You might say---9 kids, a teacher and 2 aides---fine. Well, these are nine kids with quite severe special needs. I don't know everyone's story, and it's not my place to, but I suspect most of them are somewhere on the autistic spectrum. They are all about 5-6 years old. That means---they can do little for themselves. Even regular kids that age can't, but kids that are only somewhat if at all verbal, that are not inclined to follow directions, that need guidance and help every step of the way, to say nothing of desperately needing extra teaching---there is no way anyone can do that with 9 kids. I stayed today for breakfast---only one aide was there, the rest were getting more kids at the bus. She had 5 kids to take care of and give breakfast to. She is wonderful, but that is too many kids. All of them needed food opened, needed reminding to use utensil, to keep their hands to themselves, to not take off their shoes and throw them (Janey). One little boy told me in a tiny voice he didn't feel good, that he was scared. Another was very upset I opened his milk in a way he didn't like---I'm sure he has a routine for everything. Some ate, some didn't eat. One boy ate so eagerly the whole room was covered with spills, as well as all his clothes. And that was only a part of the class. I felt awful leaving when all the teachers got there, but that is why I am sending Janey---to get a little break.

And the room itself? Terrible. Broken tables, dirty floors, a hallway outside the door that is insanely unsafe, stairwells from some hellish dream. These are not elementary school rooms. They came with no toys, no books. The teacher brought some and I have brought in some. I saw after a few days the toys were like the Toy Story 3 toys---kids go through toys fast, and autistic kids even faster---they bit toys. Why shouldn't these kids have a class in any of the 50 or more elementary schools in the city? Why shouldn't they have a basic set of books and toys aimed at their needs? Why do we give them the dregs?

And there is money being spent like crazy on this program---money for about 20 buses, all with monitors, money for a huge amount of staff, money for air conditioning, breakfasts, lunches. There must be a better way. They could take that money and divide it up and let every child attend some kind of specialized camp---one already set up with toys and books and workers. They could provide respite care for parents to be able to have their kids at home in the summer and not go insane. They could buy every kid an iPad. They could do a lot of things. I'm sure I don't understand all the regulations, the restrictions, the rules. But I look at what the teachers and aides are given to work with, and I feel for them.

So, Janey is happy there. She likes noise, confusion, activity. She likes to be out of the house. She likes the nice cold air conditioning. And I think she likes being among other kids that are a little like herself. I don't know how much she understands, but she must sense at school that she is not like most of the other kids. She must spend a lot of the day confused by what is being done. Here, I think she gets it. She gets kids with their own issues. She likes it that she's not the only one running around, jumping up and down, making odd noises. And that too is making me think a lot. Her inclusion school has millions of books, toys and materials. Would it have less if the kids were all special needs kids? Kids that are sent to school on the bus because perhaps their parents don't have cars? Kids that aren't going to go home and complain, because they don't have the words to do so? I would like to hope that has nothing to do with it, but I am not so sure.

Tuesday, July 12, 2011

So far so good

Well, after the open house for Janey's summer school, I didn't have a lot of hope about it. However, after two days, I'm feeling much better about things.

I got an amazingly wonderful offer of help from one of Janey's teachers, Ms. Allie. She offered to go on her own time with Janey to the first day of summer school. I am really not sure if I would have even sent Janey without this offer---I was considering not sending her. But knowing she would be with someone who knows her well and loves her, it was worth a try. I talked to Janey all weekend about school, about Ms. Allie and about how it was just for the summer. I don't know what Janey understood, as I never do, but she didn't cry at all when we were in the parking lot. As we got out of the car, she saw Ms. Allie, and she never looked back. I stayed with her for about an hour, and then left, and when I picked her up, she was truly as happy looking as I've ever seen her in her life.

I had and have some concerns about the physical plant of the school. It's housed in a falling apart high school, and Janey is on the 2nd floor. The floor is open to the 1st floor in the hall, kind of like a hotel lobby. The spaces between the horizontal bars along the hallway are about 8 inches---too wide an opening. Janey would not be a climber, and is good about holding hands, but I fear for other kids. I called the special ed department to express my concerns, and got some of a non-committal answer, but I felt better that I did tell someone.

The teacher and two aides assigned to Janey's room add to my incredible lucky streak with Boston teachers. They all seem great---they seem to love Janey, to love kids in general and to understand autism.

The strange thing---there were supposed to be 10 kids in Janey's class. Only 2 have showed up so far---Janey and another boy from her class during the regular year. They added another boy today not originally on the list. That's one heck of a ratio, but I wonder about the other kids---why aren't they coming? I think the buses are very messed up, and perhaps the general reputation of the summer program, which in past years was not good, scared them off. I could have been one of those not showing up, and I'm glad I didn't get scared off.

Janey was wildly happy again today when I picked her up, and one of the aides told me she had used the potty to pee in! I almost flipped. She cried in the car on the way home, and it was quite apparent she didn't want to leave. Tonight, another huge surprise---Janey was fussy, and I was talking to her about her day, and said "You really like summertime school, don't you?" She paused and said clear as day "Summertime school is the best!" Tony and I just looked at each other in awe. She doesn't ever say things like that. I've never, ever heard her make that kind of statement when it wasn't direct or indirect echolalia.

So, I hold my breath, but for now, it looks like summer school is a hit.

Thursday, July 7, 2011

Well.....

I took Janey today to the open house for her summer school. I'll start with the good, just to not be depressing. The teacher of her class works at the Henderson, so she was a familiar face to both Janey and me, which was great. Of the 10 kids in the class Janey is going to be in, 5 of them (including her) are also in her class at the Henderson, so she will be with a lot of kids she knows. There are two aides in the room, so 3 adults overall.

However....Janey was INCREDIBLY upset at the open house. Probably the worst upset I've ever seen her have in a public place. It was awful. I had been telling her all day we were going to see her summer school. I tried hard to think of a way to explain that it was just for the summer, then she will go back to her regular school. I never have any idea how much Janey understands, but she seemed excited about the whole thing, and was standing at the door eager to go when it was time. But the SECOND we got into the parking lot of the school where summer school is held, she started screaming hysterically. The school is a big huge high school, and not a welcoming looking place. Just to get to the room where her class is took an epically long hike and an elevator ride. Janey was hysterical, and wanting her shoes off very badly for some reason. The floors in the halls were filthy (the classroom was clean, though). She screamed the whole time I was trying to talk to her teachers, she screamed the whole way out, she screamed the whole way to the car. It was something else. I am quite sure she thought she was going to the Henderson, and suddenly, instead, here's the huge scary school she's never seen. And anxiety and her natural reaction to any kind of stress took over. And everyone in the place (it seems to me) is looking at me like they have never in their life seen a child the likes of Janey. I look at the other kids that are there and wonder what special need they could possibly have---being extra cute and easygoing? That's just my upset talking, but still...are there no other kids like Janey? Is nobody as tough as her? I was in tears in the car.

But I have to try it. I liked the classroom itself. I just feel for the teachers and the other kids. But people have told me not to think that so much. The teachers signed on to be special ed teachers. And Janey is wonderful in many ways. And I need that time each day. I will go insane without it. So we'll try it. If they can handle Janey, hopefully she'll calm down in time. If they can't handle her, hopefully they will tell me.

I hate the pain Janey must be in, the fear and the inability to express that fear except by screaming. I hate it that she has to go through that, and that I have to go through it. I hate a lot, today.

Sunday, July 3, 2011

Crying Checklist

Since the return of the hysterical crying, we've been working on ways to stop Janey's screaming spells in the bud. Nothing always works, but we're developing a mental checklist, which I want to work into a written checklist, so in the heat of battle, we remember what to try. Here's a first attempt, in order of the first thing to try to the last

1. Food. Janey is often hungry but doesn't recognize that. When she screams, getting food into her often helps a lot. Sometimes to make this quick, we give her a milk bottle (with Strawberry Quik in it) That sometimes stops the screaming short. After that, we make sure to offer her lots of preferred foods. This works pretty well, as Janey's preferred foods are not high calorie, so she can have unlimited amounts of them.

2. Noise. We have a policy that if Janey is crying, we turn off any video she might have on. She is often upset by parts of videos, and that sometimes is the reason for crying. Or they are near over, and she is worried about that. We also turn off any music or other media we might have on.

3. Sleep. If it's close to bedtime, I just lie down with Janey and try to get her to sleep. She's pretty easy to get to sleep, so that can be a good quick solution.

4. Attention. This isn't what Janey wants as much as it would be for most kids, but sometimes it's what she needs. We will just hold her, or depending on her mood, play with her with a preferred toy---right now, a ball or hula hoop.

5. Bath. Water works wonders with Janey. In the summer, this can also be a trip to the backyard for her wading pool.

6. Change of clothes. Janey prefers no clothes, but as she gets older, we are working to get her over that! She'd rather wear dresses, so putting one on her sometimes helps.

7. Pain. Janey has never been able to tell us when she's in pain. If we have reason to think she might be, sometimes giving her a dose of Tylenol helps very much.

8. Change of scenery. This often doesn't work, but it does, it's great. We put Janey in the car and just drive. Having the windows down if possible is something that really seems to help.

9. Ignoring. This is close to a last resort. It doesn't make the screaming better, but it doesn't usually make it worse, either. This is something I often see mentioned as a strategy, and I think it works much better for kids that are screaming for attention. She doesn't usually scream for attention, so whether or not we pay attention doesn't affect her much. But sometimes, it saves our sanity just to take a few minutes and let her yell.

10. Crying couch. On days when it's very, very bad, I try telling Janey she can only cry on the crying couch, our smaller couch. I just put her there whenever the yelling starts. I don't think this does much, but it is something to do when nothing else has worked.


I'm sure there are more, but 10 is a good start. And there is no guarantee any of those will work at all. I'd say half the time, none of them do. But it gives us something to try, and feel less helpless. I think sometimes her crying is caused by internal scary things. She still mentions "The clicking sound" or "the banging sound" now and then. I wonder if those are her hearing her own heart beating when she is very worked up, or if they are internal noises. I think our pediatrician might have been onto something when he said Janey might hear voices at times. I am working on teaching her "I am scared" and once in a while, she says that, or "that's too scary". I don't think she really gets the meaning, but she might at some point.

I feel for anyone that deals with the screaming. One of the hardest parts is that people don't get the intensity of it. It's not like a fussy kid whining or a spoiled kid crying. It's about 100 times more intense than that. It's completely impossible to carry on with our day when it happens, impossible for the boys to do homework, for us to have company, to even keep your sanity much of the time. I hope it gets less as she gets older. Boy, do I hope that.

Friday, July 1, 2011

Moral support

The other day, I was at my wit's end. Janey had started the day with screaming, and by noon had worked herself into a huge screaming festival. I was tired, the kind of bone-weary tired that I get on days like that. Summer was looming ahead as two months of shear hell. And suddenly, I realized what I must do. I called my friend Michelle. We'd talked via email a lot, but never over the phone. She called me back after I left a message, and BOOM---what was a horrible day turned into a red-letter day. It was WONDERFUL to talk to someone that understood, someone with an autistic daughter of her own, someone that just got the feelings and frustration and emotions of the life I'm living. I am blessed with many wonderful friends, but I don't think anyone except someone else who has lived this life can really, really understand.

And that's one thing that's wonderful about the internet. I would not know her in "regular" life. I can't imagine being a special needs parent before the internet existed. It came into wide use the same year William was born, in 1994, and from that time on, it's been there for me. And of course, the internet is not an entity on its own. It's people---people that reach out to others and to whom we can reach out, and realize we are not alone, not at all.

I have read a few great comments on this blog lately. That means a lot to me also. I write this mostly as a release---a place to go to when I need to say things that I don't have another place to say. But when I realize that it's helped others, either by telling them that others feel they way they do, or by sharing with people who would not otherwise know what life with autism was like, it's a huge boost. I want to be able to do that---to let people know they aren't alone, to tell what in my eyes is the truth about autism, the good, the bad, the terrible, the funny---not a syrupy rainbows and unicorns view, or a view that advocates a certain strict regiment, or a judgemental view, but just my personal view, which I all I really have to give.

And how is Janey lately? Well, summer is not easy. She is adjusting a little, I think, but then will come summer school and a new challenge. She has another loose tooth and it's bothering her a lot. She has had a few huge sprees of getting into things when I got lax about bungee cording the fridge. She loves the wading pool, and that is a saving grace. We'll get by, for now. With a little help from our friends.

Monday, June 27, 2011

Screaming

The past few days have been a roller coaster. At times, Janey has been incredibly tough---as bad as the worst of the bad days. On Saturday, she spent huge parts of the day just screaming. And I mean the kind of screaming you can't even imagine unless you've seen and heard it---screaming with her mouth wide open, a look of fury or terror or something in her eyes. She is scary when she does that, scary to herself and scary to us. It comes out of nowhere, or from a simple refusal to do what she wants right when she wants it, or when she just feels slightly frustrated even. It happens more when she is tired, or hungry, or bored. And it's unbearable, pretty much. We have been doing everything we can just to avoid the screaming---taking her for long rides, which she loves, doing nothing but holding her, keeping her incredibly busy. Today she was cheerful almost all day. Both Tony and I were home all day, and did nothing but play with her. It was nice, but not doable every day. And even so, by evening, she had a screaming fit. She tried to bite Freddy, which is always my big fear when she gets like that, or that she will bonk heads with us hard, or hurt herself somehow. I have no clue, no idea how to help her. We actually lowered the dose of her medication after this got started---we had been on a higher dose for a month or so and things seemed to be gradually getting worse. I am not going to keep giving her doses of medication that don't seem to do anything, or make things worse. And I don't think there are a lot of other medications out there. Or ideas out there on how to help. I am very, very worried about how she will do in summer school. Mainly, I worry how the teachers and aides will treat her if she is very difficult. I know at her regular school, they love her enough to handle the tough times, and they know me well enough so that if they couldn't, they know they could call me. But here, they won't know her. I did hear that some other kids are going to the same location from her school, even one boy in her class with a very nice concerned mother, and that helps to think about---I'm not all alone. But with a child that can't tell you about her day, it's scary to have her at a new place. However, I think I have to try it. I have to stay sane. I can't be a mother to her without breaks now and then. Even with these few days of summer, which weren't much more than the weekend, I felt completely overwhelmed and out of energy. I am finally admitting that Tony and I need help with her---by respite from school, and more if we could get it, which we can't, so school and summer school are our lifelines.

And yet, there were times lately she was precious. Today she did one of her very, very rare pees in the potty, which was great. There was a long period today when she was being so engaged and cute and loving. We played all kinds of games like Creep Mouse and Here We Go to Boston and things. She loves being outside and playing in water (and making mud pies) She loved our car rides. She is talking a tiny bit more than a few weeks ago. It always seems slight progress comes with these hours of horror. Maybe every time she steps ahead a little, she sees how far she is from the rest of us, and how little she can communicate. I'd scream too.