Thursday, August 26, 2010

What does Mama say?

Just a little anecdote--- tonight Freddy was asking Janey questions like "What does a cow say?" For fun, he threw in some people, and got to "What does Mama say?" Janey thought a while and then said "Great job, Janey!" and clapped her hands! I was pretty touched---either she thinks I am encouraging her a lot, or else she just didn't want to answer and was saying what she hoped I would say. Either way, it made me happy. It was a lot better than the other day when I got upset that she was pulling stuffing out of the couch, and said "We never, NEVER take the stuffing out of the couch!" and she got all upset and said "JANEY! You go in time out and STAY THERE!" I really don't think I've said that very often to her, maybe 2 or 3 times, but it shows---she remembers.

Tuesday, August 24, 2010

Out of the house

Lately Janey is really wanting to be out of the house a good deal of the time. She gets very bored and antsy, and gives us subtle hints like bringing us her shoes, trying to open the doors and getting extremely thrilled at the suggestion of going someplace like the grocery store. Yesterday was the last day of Tony's vacation, and we hadn't done much, mainly due to a lack of funds. So yesterday we went out more, mainly to thrift stores. At night we decided to go to Savers, and took Janey. The place was pretty dead, due to it being rainy and a Monday night. Janey was happy, and showed it by laughing up a storm. You could hear her all through the store, loudly. She laughs in, well, a little bit crazy sounding way. And people noticed. One old biddy kept looking at her, and obviously wanting to say "What's wrong with HER?" Others just looked annoyed. I thought to myself---"Hey, you'd all like it a lot less if she were screaming!" And really---a 6 year old girl laughing? How much can that really bother anyone? Later I put her up in the carriage and we looked at tops together for her. She got her heart set on a ugly cheap plain blue top that was a girls size 16. She kept trying to put it on, and I kept trying to sneak it back on the rack. There was no explaining to her that it didn't fit, and it was, well, horrible. But the whole interchange between us was one of my favorite moments as her mother so far. It was so normal in a way---mother and daughter fighting over clothes. It was something I enjoy---clothes shopping at a thrift store, and something she enjoys too. We had some laughs together, and eventually I managed to distract her from the Wonder Shirt. I left the store feeling very happy, despite the odd looks. I hope I have a lot more times like that---our very own version of normal.

Thursday, August 19, 2010

Janey is Six

Janey turned six on Monday. It's been a nice week. Tony is on vacation, we are all relaxed and pretty happy, and Janey has overall been a joy. I don't want to credit the medication, but maybe I should a little. She just seems a lot more relaxed. It's also probably just her getting older, and us modifying ourselves. I think my thinking changed this summer at some point. It might have happened over a few day period when three different people I respect all said pretty much the same thing in different ways---it probably makes no sense to spend lots of time and energy trying to teach Janey a lot of academics right now. We've been trying for a long time, and she hasn't learned and all of us get upset and worked up. I'm not giving up on her learning, I'm giving up on it being on our timetable. I have faith she will learn a lot, when she wants to. Just like she will be toilet trained, when she wants to. It doesn't work that way with "regular" kids, but I have to accept it is the only way it really works with autistic kids. The big difference is that they are not trying to please you. Almost anything you teach other kids has an element of having them do what you want to please you---to make you proud they get an "A", or go pee-pee in the potty, or tell you their shapes, or what have you. Janey doesn't live to please anyone. So when she decides herself she is going to do something, she will do it. I'm not saying you can't control her behavior at all. But the way it is controlled is by making HER happy or upset by what she does. So when we get mad at her for spilling all her Nestle Quik powder on the floor or playing in the litter box, we are making HER feel unhappy, and that is what she remembers. It's harder to think of a way to make HER happy she knows a letter or a shape. I guess I could get mad at her for NOT knowing them, but that's cruel.

And in making that connection, and giving up some of my expectations, she seems so much happier. And we are enjoying her---especially sometimes in contrast to her teenage brothers. It's fun to have someone that can get extremely happy over a bowl of oatmeal, or a 100th viewing of a video, or a trip to McDonalds, or a hug. It's sweet she wants to snuggle me when she's tired, and hear the songs I've sung so many times. It's exciting hearing what she chooses to say---if we aren't trying to make her talk in a "normal" way, every word can be a surprise treat.

And the OCD, don't tempt fate part of me has to temper all of this. I don't know how school will be, when it starts. I don't know how much of her happier attitude is medication induced. I don't know if this is just one of those unexplained good stretches, to be followed by an unexplained bad stretch. But I hope we are getting to really know Janey, and that is helping.

Sunday, August 8, 2010

Distrust

Through a long complicated series of events, I've been forced back into thinking about Why. Why Janey has her issues. I got a skin infection and was put on a sulfa drug. From the minute I started taking it, I didn't feel good. After a few days, I knew HOW I didn't feel good---I felt like I did when I was taking the Aldomet, when I was 12 weeks pregnant with Janey and had a near fatal reaction. If I had been smart, I would have stopped taking the drug right when I realized that. But instead, I tried to do the right thing---I called my health plan and tried to explain how I was feeling and ask for a different medication. The nurse I talked to shut me down---basically said she was sure I had no reaction to the medication and I should keep taking it. And I did---right until after a dose I took last night sent my throat into a closing up feeling, and I wound up having an ambulance ride to the emergency room, where I had quite a fever, chills and blood tests showing my liver function was being compromised---AS WITH THE ALDOMET. And even then, the first doctor I saw said he was sure there was no connection---JUST LIKE a doctor said the day after the awful Aldomet reaction. Finally the second doctor did acknowledge what I had already read many places on the internet---that sulfa drugs often cause a fever reaction and coughing similar to mine, and I should stop taking it and not take sulfa drugs again.

I don't know if the Aldomet caused Janey's problems. I can never know for sure. But I think a lot about the day they were prescribed for me, when my blood pressure was rising fast early in the pregnancy. I saw some substitute doctor that day, and she was so casual---"Oh, Aldomet's the safest drug around, very good for pregnancy...." And I guess it often is, but my later research has shown it often causes horrible side effects, almost every one of which I experienced. That, and other experiences, like the neurologist who sort of off-handedly said Janey's MRI wasn't normal (while a further one said it was normal, and still, who knows?) and the recent few bad experiences with taking Janey to doctors, has left me with a distrust. Not of all doctors, and not of medicine in general, but of taking what doctors say as gospel. I'll never have that faith again. I need to always verify for myself.

And it comes back to WHY? The useless question. If I had gone to a big hospital for my medical care with Janey, rather than staying at the smaller clinic where I was comfortable, if when Janey's heartbeat started lowering to almost nothing, they had done an immediate C-section and the cord had not been strangling her, if I had not taken the Aldomet, if somehow my pregnancy was like the one with Freddy, healthy---would Janey be okay? Or should I think the other way---that it's a miracle she's here and as relatively intact as she is? Should I have gotten the message with William that my body is not cut out for pregnancies, and stopped there?

None of these questions have any answers, and I should not ask them. It doesn't do anyone any good. But I do need to keep a lesson in mind. I know my body. I know my kids. If something feels wrong, I need to respect that feeling. The consequences are possibly too much if you don't.



Friday, August 6, 2010

Really?

I startled Janey last night. It was interesting---I don't think I've ever startled her before. She doesn't startle easily---she gets scared, but sudden unexpected things don't usually faze her. But she had fallen asleep maybe 15 minutes before I walked in the room and put on the computer. She jumped right up and started screaming and crying. She said "I scared you! I scared you!", reversing the pronouns as she usually does. I went over and held her and talked to her, and she started saying "I'm a scarecrow! A SCARECROW!" I realized she had watched an episode of Bob the Builder, and I think there's a scarecrow-like weird pumpkin head guy on that. Maybe she was having a nightmare, or she just thought scarecrow meant a scared person, or who knows what. I said "Scarecrows aren't to scare people. They are just to scare birds." Then she did the most unusual thing. She leaned in very close to me and said in a very low voice, in a tone I've only heard her ever use once or twice, what I would call a "normal" tone, a tone that sounded non-autistic, "Really?" It sent shivers down my spine. It's moments like that which can make people think somehow there is a "normal" kid inside every autistic kid---little moments of, I don't know what, clarity, or coincidental perfect timing, or something. I can't explain just how the tone was---it was just very, very different than usual, and had the body language along with it---the way she was asking was like "You can give it to me straight here. I want the truth" And then it was over, and I don't want to make that much of it. Mostly she's been pretty much as usual. Fairly happy most of the time. We've been home and I've been letting her do a lot of what she likes to do, and trying to do my own modified "floor time" about 4 or 5 times a day, just gathering a bag of toys she might like and interacted with her as much as she will allow, and trying to sneak in a lot of little bits of knowledge like counting or colors. Which I know you aren't supposed to do with floortime, but I said it was modified. I've been reading to her a lot too---pretty much just nursery rhymes, which I have a large collection of now. She likes to know what to expect to hear next---just the different pictures in the different books is enough surprise for her.



Monday, August 2, 2010

Two weeks until six

Janey will be six two weeks from today. Birthdays always bring up a nest of feelings. Every year, I think to myself "Maybe next year she'll know what a birthday is, look forward to it, get excited about it". I think this year I'll stop thinking that. I get with her like people get about getting older---I don't want her to get to be older, because that's just putting her further from where she "should" be mentally. That's a bad thought, but a truthful one.

Presents are another nest of bees. She already got one present, from the very wonderful lady who has volunteered to work with her this summer. It was so nice---a fairy wand that is perfect for her, and wooden bears you can change the expressions of. And of course Janey had the typical gift reaction---freaking out, screaming, throwing it around. And the woman was hurt, despite trying not to be. And I was mortified. And of course within an hour, the fairy wand was her favorite thing ever---she's loved it right to death already. But presents are tough---they aren't expected, they require a reaction she doesn't understand, they are nightmares for her in some ways. As would be a typical birthday party. And that's fine---for her. For me, it's harder. I still hold onto the dream of giving her a little girl party, with some special presents that she will be thrilled about. I dream of getting the American Girl catalog and going through it with her page by page, talking about what we would order if we could, and maybe picking out a few special thing to get, and some Christmas blowing all my money and buying her a doll and furniture and it being something she remembers always....and it's never going to happen. And I need to get over that.

I ordered her presents from a web site I should give a shout-out to, for other parents of autistic kids. It's officeplayground.com They are aimed at little toys for use in offices, but they realize a lot of the same toys work for autistic people. They have all kinds of "fidget" toys, things you can play around with using your hands, like stress balls, Tangles, those toys with water inside that looks like waves, etc. Their prices were good and I ordered her about 10 little toys. I hope she likes them. It felt like a realization. I didn't try to get her typical 6 year old toys, because that's what I wanted to get. I tried to get her something she'd love. I need to do that with as many aspects of her life as I can. She fights such an uphill battle just fitting into this world; I don't need to add to it.

Her birthday is also Freddy's birthday---he will be 13. Maybe that all was arranged somehow---that I'd have another birthday the same day. Who knows? Freddy wishes he had his own day! He's ready to be a teenager---he's been one for a while. It makes both their birthdays very special to me. I'm so lucky to have them both, and their brother William.


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