My autism philosophy

Slowly I am trying to figure out just what my philosophy on autism and raising Janey is. I think it's something I have to do, so I don't just feel like I am doing all the wrong things, or not following all the advice out there. I need to be confident that I am doing what I think is right, and I have to look at William and see that I already did it right once---there was a time it would have been impossible to think of him in a regular 8th grade classroom, not on any IEP, happy and doing pretty well, a fine young man really. I don't know why I feel so useless sometimes when I have already done what many strive to do. I have to feel like I do know something. But there is so much more about autism out there now than there was then, and everyone has such strong opinions. I am not a fighter or a warrior or anything like that. I can't be. But I do know Janey. So I am going to try to figure out what I want to do for her.

Here is my first priority---love her and surround her with other people that love her. Make that my number one priority in terms of everything she does---her education, her surroundings, who is near her. If she isn't loved, adored, I don't want her there. She is a sweet, beautiful four year old girl, and that comes before any autism or anything else. It is why I am at peace with her school. Her classroom might not be winning any prizes for academic achievement or being on the cutting edge of autism treatment, but boy, do they love her. Both teachers and the aide have known her since she was two weeks old. They are some of the most loving and caring people I've met. The other kids seem to adore her too---especially a few of the boys, who fight over who gets to hold her hand! The girls run up to her to say hi. The therapists all beam when they talk about her. Even the subs are people that know her, and are so thrilled when she remembers them. THAT is what I want for her in a school. She certainly gets a huge amount of love from Tony and me and her brothers, from her aunt Carrie and her Nana and Grandpa, her cousin Zeben and from special friends of the family. I never want people to see her as a challenging case, or a little girl with odd behaviors that need to be taken away. I too want her to stop looking at her hands or repeating odd phrases or not answering questions, but much more than that I love her and that including for now loving things she does.

Putting television to use

I've always felt that it's not a big problem for kids to watch TV some. I get a lot of this attitude from my sister, who always let her son watch as much as he wanted. I can't think of a much smarter or better adjusted boy than her 17 year old son, and now he doesn't watch much TV at all, and neither do my 14 or 11 year old (Freddy never did, William did at times).

For a year or so, Janey wouldn't watch any TV. It was too unpredictable for her, I think. Lately I've tried having a routine for TV. Every day we are home, we watch Sesame Street and Word World. She likes both of them a lot, and I watch them with her. They have pretty predictable routines (Sesame Street a lot more now than in the past, with Elmo's World and so on) and watching them day after day,she is getting very happy with them,and saying letters along with them. I think it's a non-threatening way for her to learn, as opposed to drill or flashcards. I know many would disagree. But slowly I think I am developing my own philosophies about her, and having more courage to believe in them.

New words

I am trying to introduce Janey to a new word each day, by saying it over and over again in conversation and trying to really emphasize it. I am starting with feelings words---yesterday was "worried" and today is "excited". I don't know if it will work---I haven't heard either word used by her yet---but I think she could really use some feelings words. The only thing she says now about her feelings is once in a while when she is crying like crazy she says "I'm pretty sad, Mama" which I think came from me saying "You're pretty sad".

Last night I was half asleep and Janey wanted me to read a book. By that she means actually don't read her the book, don't even look at it, or she will freak out, just listen to her talk about the book. So I did, and she talked and talked about it, with all kinds of word variety and sentences, I can't remember anything exactly but things like "and then the bunny hid and no one could find him"---with the sound of a child's book. I wish I could unlock the kind of talking she does when singing or when talking to herself once in a while.

Pictures

I wasn't sure how to label the pictures! I haven't put on pictures before but I thought if anyone was reading this that didn't know Janey, they might like to be able to picture her. I love the picture of her in the sweater. It shows her in her really happy mode! The one of her looking up was taken at my sister's house, looking at her ceiling fan! It shows her sort of out of it but happy look,when she is looking at things that are visual but not really tuned in. The outdoor picture is older, and shows her quiet sort of mode, which is her mode a lot of the time.

A few pictures of Janey

Hard on a marriage

I know they say a lot of marriages break up after having a disabled child. I guess I can see sometimes how that would happen. Last night we had an awful fight. Janey was crying for hours as she hasn't done much lately, but was so happy to see Tony when he got home. He had to go to a drs. appt. at 6 ( he has many, many appts to check on his diabetes and insulin and they are quick appts). He said at first he would take Janey if William would go too, then changed his mind a couple times. I said whatever, leave her if he wanted to, but William wanted to go and they were about to when something annoyed him and he started to leave (at 5:30, the appt. is 2 minutes away). I called him back and asked him to take William and Janey, and he was FURIOUS over it and was yelling in the driveway as he took them, things I am sure he wishes he hadn't said about me. I was quite hurt and when he got home we were fighting a lot. I get so burned out by Janey sometimes and it seems like he doesn't get that I have to deal with her NO MATTER WHAT if he's at work, but when I am trying to work or make dinner or anything, he deals with her IF there is nothing else he feels comes first. I know taking her to a drs. appt. is not the best situation, but William is 14 and easily capable of watching her in the waiting room, and Tony did offer. Oh, well, of course the silly details are the tip of the iceburg, we are both just in over our heads lately and overwhelmed with financial problems and not really knowing how to help Janey best and our falling apart house and all. I shouldn't complain but sometimes I do anyway.

Feeling better, good talking days

After last week feeling so depressing in the middle, the last few days have been better. Janey has had a few good talking days. They are few and far between but I do love them. On Friday she got a notion that she wanted a chocolate bunny. She adores them, but I had thought she had stopped asking for them a while after Easter, but something reminded her. It was really no use trying to explain seasonal merchandise to her. She was full of suggestions "Let's go to the CVS! Let's go to the chocolate bunny store!" That night,when Tony asked her if she needed help with them computer, she said "What the heck..."She's been singing more little songs too, mostly about Sonic. She really has no idea who Sonic is, I don't think she's ever seen him in a cartoon or video game, but she loves him. She sang a very,very long song at the grocery store about Sonic flying high in the sky like a butterfly. All made up by her.

A friend of mine suggested I try to write down more of the smart cute things Janey says, to help me feel better on low days. At first I felt annoyed by the suggestion, like it was sort of Pollyanna-ish, but it actually was a good idea. So many days feel like treading water or going backwards, it's really good to remember she does make progress.

Depressed

I have been depressed lately. Usually I do pretty well not letting things get me down, but not lately. I am feeling like I am no good to Janey, that I don't do the right things to "cure" her, even though I don't believe in cures. But the people who do, who have faith in lactose free diets or ABA or Floortime or anything, at least feel like they are doing something. I see Janey making her hand circles, or obsessively pushing buttons on a play phone, or getting hysterical when I sing a song that might make her "stuck", or ignoring the 2 sweet girls from her class that run over to her and say "It's Janey! Janey's here!" when I know in a few years if she doesn't ever respond, they will just stop trying. I just don't get sometimes why this has all happened. I KNOW she wasn't autistic from birth. I KNOW something happened, starting around June 2007. But what? What did I do or not do, or what happened in her brain, WHY? Why can't I have a girl like it sometimes seems there are a million of, so talkative and cute and lively, or even shy and clinging and just wanting to be with Mama, but talking to Mama and her family, or even a brat who is smart as a whip (no, I don't really want that). Most days I am good at the unconditional love, but other days it's not that it's conditional, but it's just harder to feel an outpouring of it. I feel someone else could do such a better job than me.

More hands in front of eyes

Janey is really getting into the visual stim type thing. It upsets me a lot to see---it interests her more now than most anything. I find her often when I am not completely engaging her off in a corner with her hands over her eyes like glasses, looking at things that way. It's scary that she loves to do it so much. But on the other hand, some good talking lately. Last night she walked all around the house saying what she saw---"I see my computer, I see the TV, I see the cram-raw (camera)" etc. The way she says things she doesn't usually say is so different than how her usual talking is, it's slowed down and in a whole different tone, that is how the "cram-raw" was said. The other day I put new sheets on my bed, and she wanted so much to comment on it. You could also see the wheels turning, and finally she said "you have a snowman blanket". Actually, it was sheets with snowflakes, but I certainly got her point. It's nice she does still try to communicate.

Hands in front of eyes

Janey is doing something I guess is technically called "stimming" a lot. She holds her fingers in front of her eyes and looks at them, moves them around and looks at light and dust through them. She also makes them into circles and uses them like telescopes. It's more and more of the time. I hate to see it---it's like she is fading away in front of me when she does that. I don't know how to keep her from doing it. Today I tried doing it with her, making it a game and talking to her about it, but I don't think that did much. I am resorting now and then to pulling away her hands and saying "don't do that" but I doubt that does a thing.

She did today remember I told her days ago that one of her toys needed new batteries. She brought it to me and said "It's broken. It needs batteries."

I tried toilet training stuff a lot this morning---putting her in just leggings so she could pull them down easily, putting her on the potty a lot---nothing. She did run into me after wetting all over the kitchen floor and her leggings and said "I can't pee in the potty"----yup, I noticed that, Janey. Probably a very encouraing connection but sometimes I get tired of encouraging and just want actual results!