Tired

Tired takes on a whole new meaning when you don't sleep much for nights in a row. I've been relatively lucky with Janey---most of the time, her sleep is fairly okay---she'll go to bed around 8 and sleep until about 5, which is close to the schedule the rest of us have---we are early to bed, early to rise folks. But when something throws that off, such as her sickness this week, it's hell on earth. She has been known to stay up for nights in a row, in one of two modes---the manic mode, where she is happy and hyper and wants to watch TV, eat everything, play, turn off and on lights and so on. And then there's the crying mode, where she can literally cry all night---that tuneless moaning cry that just completely wears you down after a while, a short while. I am not sure which is worse. The manic is harder to watch, as you have to be totally alert to make sure she doesn't get a fun notion like eating cream cheese out of the container or standing on chairs to reach food that is up high, but the crying mode is harder to take, although if you try very hard, sometimes you can drift off a little during it. But the nights aren't as hard as the next days. I call it zombie mode---you can sort of function, can drive people places hopefully okay, can say hi and look a tiny bit normal, but once the slightest chance presents itself, you are napping. And needless to say, nothing gets done---no dishes, no laundry, no work, no anything. Which leads to depression, for me anyway, at living in a pit and not being up to doing much about it. Sometimes during these cycles I feel like I'm part of some cruel secret sleep deprivation experiment. It's hard because Tony works very long and early hours---he leaves the house at 5 and gets home at 5, and then needs to get to bed about 8 to be able to function. So night duty, although he tries hard, is usually mine, and day duty too. He's great on the weekends---I have to give him a huge amount of credit. But during the week, it's mainly my game, and believe me, I'd be up for it if I got enough sleep. When I don't, I'm doing things like this...writing long complaining blog posts while my eyes flutter open and shut and my mind cries out for coffee.

Rant about doctor's appointment

It was obvious last night Janey was pretty sick---she had a fever and barely slept, just cried a moaning cry all night, and she was refusing anything to drink---when she tried to drink, she screamed. I kept her home today and although I don't usually rush to go to the drs, I had a feeling I needed to, especially because she can't tell me what's wrong. It turned out she has pretty bad strep throat---it showed up almost instantly on the rapid strep test, which I guess usually doesn't happen. But getting to that result was just awful---I guess I've been lucky over the years, but I didn't my regular doctor and in fact didn't even go to my regular office---my doctor is part of a group that has lots of locations and I chose a nearer one for today. The nurse practitioner I got obviously had no understanding or sympathy for autism. She kept asking Janey questions, although I told her she would not get answers---I think she thought someone Janey was just shy and if she asked enough, Janey would answer. Finally she gave up on that, saying something like "I know you understand me, so tell if if you want to". I felt like screaming already at that point. Then she seemed very surprised Janey wasn't totally open to have her ears looked at, and after at first acting like I was crazy to immediately hold Janey down, saw quickly I had to. Then she tried to look in Janey's mouth. No way. She put in a tongue depressor and tried to sort of pry her mouth open. I said Janey would bite the depressor, and she shrugged me off. Janey did bite it, and had half bitten it off by the time I forced her mouth open enough to get it out. Then the NP tried a last ditch effort to stick those strep testing swaps in Janey's mouth. Janey freaked out, and when she got the swabs out, the NP saw Janey had bit the end off them. She sort of freaked and tried again to get Janey's mouth open, but I just put my hand in front of Janey's mouth and she spit them out for me, which she is pretty good about doing. By that point, the lady had had enough, and said she just couldn't do it, and would just give Janey medication without testing her. I said no, that giving Janey medication was so hard I wasn't going to do it unless I had to, and that I could hold Janey in such a way that she COULD get the swaps (I had told her this at the start, but of course, what did I know?). The lady left without talking, left the door open, and said in a loud voice "Can anyone helps me with a strep test on a NON-COMPLIANT PATIENT?" And then lots of muttered complaints about Janey. Finally, she got a medical aide to come in, a young lady who must be the brains of the office, and she did exactly what I would have done---held Janey's nose until her mouth opened, and then held her mouth open gently but firmly and got the swab nicely. I thanked her very much. The NP was obviously super annoyed by then. It was actually the medical aide who came right back in to tell me Janey did have strep.

Lots of ranting, but my points are a few---why couldn't the NP LISTEN to me and BELIEVE what I was saying? Janey DID NOT understand her, was scared to death, has no idea why she is there or why we want to open her mouth, is feeling sick to boot. And LET ME DO what I know works---it's not the NP's way, but I know Janey, and I know the quick and firm approach will save us all a lot of time and anguish. And DON'T call Janey non-compliant. She is 5 and she is autistic. I would have been fine with her saying just that---"could anyone help me a little with an autistic patient?" Autism is not a bad word. I know Janey's autistic---it doesn't upset me to hear that. And don't fall into all the old stupid beliefs---I felt she though I was someone speaking for Janey and preventing Janey from speaking. God knows if Janey could speak for herself, I would love it beyond all reason. I always let the boys speak for themselves at the doctors, from the time they could speak. They are both very confident and outgoing with medical people, I think partly due to that. But Janey can't. And I WILL speak for her.

Church and autism

I am not terribly religious. I go back and forth between being an agnostic and having some rather wavering belief. I'm being totally honest here. But something I do want is for my family to go to church, my children to learn the basic Bible stories, the Golden Rule, the community that comes with having a church, the music, the reason for holidays like Christmas, etc. However, with a child with autism, this is pretty much impossible to do as a family. I've searched the web, I've asked around, I've tried churches, I've put some effort into this. But church and a lower functioning child with autism just don't mix. Sunday schools are not equipped to deal with her. I could go to church and stay in the nursery with her. But that kind of defeats the purpose. I want that hour to renew myself, to reflect, to listen. And I want to do that with Tony. I want my sons to be with me. I could try bringing Janey into church with me. RIGHT.... Not only would I not get anything from the service, but no-one else in the entire church would. She would scream, run, yell, raise a fuss like you would just not believe. I've tried. I could go to church by myself, but that is not what I am looking for. I want what most people can find fairly readily---a church that welcomes our family, that has a Sunday School or nursery for that hour so I can listen, that will welcome ALL our family members. I think if some denomination really wanted to grow, a great way to do that would be to welcome families with autistic kids, and advertise that. This is another case where the current wider definition of autism hurts. I once saw a publication put out by a church about welcoming autistic members. Well, it was obvious they meant people with Aspergers or very high functioning autism---verbal people. They talked about issues that are not Janey's issues, not about how to just keep a child happy so the parents could go to church, or the siblings could. Or how to possibly include Janey somehow. I am not counting on her learning a lot of religion. But she could and does learn hymns, and that would be something I would love. I bet she could learn some simple Bible verses, without probably understanding what she was saying. And I KNOW she could feel the love that a true church community could give, and I KNOW I would be helped by being able to go to church, as we used to regularly before our church closed, right around the time it also became impossible to really go to church anyway. That's my Sunday morning thought for today.

Top Five Things Not to Say to Someone With An Autistic Child

5. Have you tried that diet that cured Jenny McCarthy's son?

4. Oh, she's going to be fine. Every kid follows their own timetable. Einstein didn't talk until he was 38...

3. I don't know how you do it. I couldn't possible deal with something like that.

2. Oh, I know someone with autism. They work at MIT. People with autism are so smart and have amazing talents.

1. You know, God saves his special children for special parents. Just think of her as a gift from God.

Whining, Crying, Talking

Janey has had a mixed morning, and it's only 7:30. She woke up about 4:30, in a mood, crying and whining and carrying on. I had had a restless night, with her as usual sleeping with me (she doesn't care for her bed and rarely sleeps there). I don't mind her in the bed, but she brought along a piece of dry toast last night, left over I guess from a evening snack, and it crumbled all up before I knew it was there, and made for a very uncomfy sleep. Then she filled her diaper while she was sleeping, making for a smelly night. All lots of fun. Then in a middle of this lovely morning she had one of her talking spells. They are so otherworldly sometimes---just out of the blue, like she's telling a story. She talks in a totally difference voice than her usual limited talking, more clearly and with more expression. This one went something like "See my necklace? I have a special necklace. The necklace is stuck, because my head grew bigger. I can't get it off." She didn't have a necklace on, and most of the words she never, ever uses in regular talk---in fact, there aren't many words she uses in regular talk. I don't know if she heard a story about necklaces, or if this is just something she was thinking about. I should just keep my mouth shut when she talks, because I can never resist trying to engage her about what she's talking about, and that just makes her shut up. I wish I could tape one of these monologues, but they happen about once every 4 months, so I'd have to carry a taping device around with me at all times. Now she's back to whining, saying her all time favorite phrase "I want a ba-ba!" and twirling in circles. She's my mystery girl.

(note from the future---8/30/13)  Reading this now, I'm quite amazed at the talking Janey did.  That would still be one of her best talks, assuming the necklace talk was original and not quoted, and I don't think it was.  It's making me realize her talking never really improved over the years, just ebbed and flowed.

Manic nights

The last few nights have been what I call manic nights for Janey. She has spells of those now and then. She sleeps very little, and spends large parts of the night running around the house, singing to herself, turning lights on and off, waking us up. If we try to contain her in bed, she screams without stopping for hours. It's almost impossible to deal with these nights. I feel totally hung over after one, as I do today, and they come in groups, and tonight shows all signs of being another one---it's close to 9 and she is not a bit sleepy acting, and that is after sleeping probably 2-3 hours last night. She was fine all day, cheery and happy mostly. It's times like these I do consider seeing if she really is bi-polar, and giving in and getting medication. I talked to her pediatrician about it. He is not terribly interventionist, which I like, but he said that some current medications aren't too bad, and that bi-polorness is treatable and if she gets worse, it might be worth really trying to get it treated. I am still skeptical. She is only 5. Just recently I've read about how the new DSM isn't going to even recognize bipolor disorder in kids. I think she's cyclical, for sure, but there might be other reasons. Maybe it's a vicious circle as when she has one of those nights, we are all thrown off and half crazed from lack of sleep, and that affects her into the next night. Sometimes the manic laughter is almost as hard to take as the crying. Some days and nights like this the future looks long and very, very tiring.

Things Janey and I enjoy

I've been trying lately to do more with Janey that we both enjoy. When I find something that we can both enjoy, without me pushing learning or me just doing what she wants to make her happy, it's wonderful. There are a few activities like that. One, as I've mentioned before, is music. When a song is on that we both like, the smile and happiness on her face says it all. She doesn't have to be able to talk to tell me how she feels. We both like big band music, show tunes, country with a beat---a lot of music that the boys in the family don't like as well, so it's great to have a girl to share with! She also loves being outside and wandering around as I did at her age and indeed my whole childhood. I spent as much time outside as I could, walking along the shore in Maine, exploring the woods and just being in the fresh air. Living in the city, it's not quite the same, but Janey loves even walking around our hilly, small back yard. It's been hot lately, and tonight, it was windy and cooling down, and off and on rain. Janey was fussy, so I took her in the yard and we both just enjoyed the wind and cool air, and let the rain fall on us. The look on her face was just like mine. It felt great. She also enjoys a good book. She has her own tastes, and I can't predict what books she will like, but if she DOES like a book, she likes it over and over and over and over. She devours it, like I would do with books when I was little. Except in her case, sometimes she literally bites the book, but still, it's similar. Right now she likes nursery rhymes and fairy tales a lot. It's fun because there are lots of different versions of both, so they can feel familiar without being exactly the same.

My family, both immediate and extended, are such verbal people, such talkers, that it's hard for me sometimes to just let Janey's face and actions talk for her. She's never said to me "Gee, I love music and nature and good books", but I know she does, and I need to enjoy that with her. Some people say she looks like me a little, although she's prettier than I ever was, and it makes me feel happy to think her personality might be a bit like mine in some ways too.

Trying to understand the talking

Janey's talking is one of the trickiest things to understand about her. I feel very, very lucky that she does talk a little, especially because it seemed at a point that her talking would leave completely during the worst part of her regression around when she turned 3. It never felt completely, but it's very hard to explain, especially to anyone outside our immediate family. I have figured out she talks less even at school than home, as they are often very excited to tell me about something she had said that I've heard a lot at home. She has a good speech therapist, but I am not sure anyone really knows what to do with her. Until about 5 months ago, her speech she did have was quite clear, but now it's not---it's often hard to understand. The most common phrases from her follow the pattern "I want...."---I want a baba, I want cheese, I want Kipper, I want light on (which usually means light off). The only other type of sentence we hear consistantly is something like "Mama is getting me a baba", kind of a variation of the simple want, saying what she hopes will be happening soon. She will sometimes give single word answers to our questions if she is being rewarded, like with M&Ms---we point to a picture and she says what it is. Sometimes she surprises us a good deal with knowing pictures we would not guess she knows. But she often guesses within a category---for example, if we show her a triangle, she will say "Circle" or if we show her a cat, she will say "dog". It makes me think she has trouble retrieving the exact word she wants---she knows it's a shape, or an animal, but not which one. It's the same with numbers and letters---she seems to know what is a letter, but will guess at the letter or the number. I think she knows the symbols, as she usually guesses a letter when it's a letter and a number when it's a number. If we give her the answer, then she guesses that for the next card always---if we tell her it's an A, the next letter will get called an A.

And then there is the rare fluent sounding talk, which is always self-talk. She will do this when looking at a book, or sometimes when walking around in circles in the yard or something. This kind of talk is in low tones, and hard to hear. It's usually a mixture of song parts, nursery rhymes, phrases she's heard, etc. It doesn't make any sense, but it has much more of the sound of regular talking than any of her other talk. I love hearing it, although it's not really useful---it's like she's playing back clips of things she's heard. Tonight it was lots of nursery rhymes, as I've read her a lot lately. If I listen too hard to her when she's talking like that, or ask her any questions, she usually stops talking.

Once in a while, she will do more simple echolalia, where she just repeats a phrase she's heard someplace. This is quite often something she probably heard with lots of emotion attached. One of the most upsetting ones is "f***ing b***h" I really don't think she heard this at home, although I certainly can't rule it out completely. I thought I was hearing wrong the first time I heard it, but I've heard it quite clearly several times since then. I hate ever telling her not to say something, but I do say "that's not a nice thing to say---those are words that hurt people" when she says that. I'm sure she doesn't really follow that and could care less, but I have to say it!

So it's hard to answer people sometimes when they ask if she is verbal. Yes, she's verbal in that she CAN talk. But in terms of answering questions (except under reward sessions) or telling us about anything that has happened to her, or understanding more than a very few things we say to her, she's not really verbal. Outside the house, when someone says "Hi" to her, or asks her name, or how old she is, they will NEVER get any answer. At home, actually, usually not either, although she can say what her name is. Every day at school, lots and lots of people say "Hi, Janey!" as she walks in, and she never answers. I'm never sure if should answer for her or not. I've started just smiling and not answering.

If I could figure out how her mind works in terms of retrieving words, and could teach her to just answer a few social questions, I think it would help her a lot, but I have no idea how to do this, and I don't think anyone else does, either.