#1. The other day, we were visiting a friend of mine who is in the hospital. As we waited by the elevator, a doctor walked by. After he was out of sight, Janey said in a happy tone "A doctor!" It was a kind of utterance I've rarely heard from her, just an observation, not a request. I was surprised at that, and that she knew the man was a doctor based on the clues of his clothing and setting.
#2. We went to the Savers thrift shop yesterday, my favorite shopping place. While Tony looked around, I had Janey with me as I looked at sweaters. She was excellent, as long as I kept up what I think of as my patter, a non-stop monologue on what I was doing, remarking on the clothes, asking for her opinions (which were not forthcoming) and generally just rambling. A woman close to us kept looking at me in a way that seemed to say "Okay, that lady is kind of odd and I will just keep on eye on her" until I saw her looking at Janey and suddenly getting another look I'm very familiar with, the look that says "Oh, I see. The daughter is not quite right" I don't like that look at all, but I'm sure I've used it myself. She followed it by a bright and fake toned "Oh, you are having fun looking at clothes with your mother, aren't you?" I am not sure what I would have rather had her do. I am being petty in my mind, but the whole thing bugged me.
#3. Tomorrow is Janey's IEP meeting. Since she is 14 now, she has the option of attending the meeting. Her teacher is going to bring her to the end of it. I am glad there is a push to include people of Janey's age and up in their own planning, but quite honestly, although it will be fun to have Janey there for a part of the meeting, I am not sure how much Janey will understand of what is happening. It's one of those cases I run into a lot, where something is in theory the right thing to do but in practice often doesn't play out to help Janey. But we'll see how it goes.
#4. I put in the high school choice form. We put first on the list the school I wrote about that I most liked. You had to put at least 3 schools down. I put 6, and listed last the school very close to our house. I don't know if it was really my last choice, but I don't want it assigned to us just because it's close. I hope Janey gets into our first choice. I am telling myself I'm ready for a fight if she doesn't, but I hate a fight. So I'm just going to keep hoping push doesn't come to shove.
#5. The other day, it was very, very rainy and windy when it was time for Janey's bus to come home, and the bus tracker app showed that the bus had gone to the bus yard without dropping her off. We were pretty sure they were really using a sub bus, and that she was fine, but she was about 15 minutes late coming home. And Tony and I both were starting to feel panic, even though it was not a panic situation. There is just something unspeakably scary about the thought of not knowing exactly where Janey is.
#6. Janey loves to watch Tony play video pinball. His favorite game is one called Funhouse, and the game often speaks the lines "Stop playing with the clock! You are making me very unhappy!". Janey's teacher emailed us last week that Janey kept saying those exact lines at school. The teacher didn't know where they were from. Tony was very, very happy to think of Janey quoting the game!#7. Tony was NOT very happy when Janey started singing along at the Savers to Billy Joel's "Piano Man" He is not a Billy Joel fan. I loved it, though. The background music in stores is something Janey always notices.
#8. The pre-IEP reports from Janey's school said she will give her name and address and phone number most of the time when asked. I know she can do this, but I've rarely heard it. I was determined to, and kept asking Janey for her address, over and over. She obviously didn't want to tell me, but I didn't give up for quite a while, until she got upset. I don't know why I do this. Partly I guess it's because she talks so little at home, less each year, I'd say. I want to hear what she can say. I am not satisfied just knowing she CAN say things. I want to hear them myself. I need to stop with that.#9. Janey's most common phrase at home is, as it has been for many years "Cuddle on Mama's bed?", meaning she wants Mama to cuddle on Janey's bed. Cuddling isn't really cuddling, either. It's laying next to each other as Janey stares into my eyes, looking at me as if I hold some secret she hopes she can figure out if she looks long enough. She will do this, if I will stay still and let her, for hours. In the past, she usually got bored of me and went for her ipad after a minute or two, but now, she often doesn't. It's almost always me who loses the staring contest, who gets restless. I feel guilty about that. I wish I knew what she was thinking, why the looking at each other is so important to her. Eye contact certainly isn't an issue for her.
#10. Life with Janey is absolutely calmer than it was in the past, especially during the tough years from 5 to about 11. But sometimes, it also feels like there is less of Janey's personality showing through, that she is retreating into herself more, or at least making her needs less known. As I said, she talks less, but also watches less TV, asks for less car rides, less food, less everything. Sometimes I despair a bit over this, other times, I try to tell myself she is just a teenager, more self-contained than she was. I think about this a lot.
#11. I am glad there seems to be a growing awareness of the need to better understand those with severe autism, those who cannot always self-advocate, those who will not live alone or support themselves, but those who are just as deserving of a voice. If we are not speaking out for our loved ones, if we are silenced in speaking for them, if we are made to feel that if we don't find a way to give them their own voice, we are not entitled to advocate for them...well, it's a complicated issue, with much caring and love for those with autism in all the differing ideas and voices, but I will keep forever doing both---working to give Janey her own voice while speaking out as best I can for her when she is not speaking for herself.
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