The other frustration

Lately I've been experiencing what for me is a new kind of frustration with Janey---frustration with her intellectual disability.  I can honestly say until this point, I was not bothered by her retardation.  I still am not, nearly as much as I am with the autism and the resultant behaviors, but I'm starting to feel that frustration, just a little.

Mainly, it's just not getting how she learns, or how she doesn't learn.  A good example is an app she was trying to do on the iPad last night---Jumpstart Preschool.  It's a little beyond her, but she's interested in it.  There was a matching task---you click on kites or umbrellas or something, which reveal a capital letter, and you need to find two that match, like Concentration.  She seemed to somewhat get what it wanted her to do, but she couldn't seem to get that she needed to try new kites if the first two didn't work.  She sat there clicking the same two kites for about 15 minutes.  I didn't jump in to help---I was trying hard to not do so, to see if she'd get it.  I don't think this was a case of stimming with the sounds.  I think she really wanted to do the matches, as when I finally jumped in and did one for her, she was delighted.  But she didn't or couldn't make the mental jump that would have told her---you need to click around to find the right letters!  Today, we were trying a math program her school uses---First in Math.  They had kind of a trippy game, where a slot machine looking bar showed something like two blue stars.  Floating around below it were all kinds of shapes in different colors.  You had to put a blue star with the other two blue stars.  Janey did understand this, and a few times, did it perfectly.  But other times, she put a shape over the shapes that were already there (which I don't think the program should have let you do) and then, she seemed to be totally thrown off, and kept putting the right shape over the wrong shape in the area where she'd get no credit for it.  She would do the same thing about 10 times, without seeming to realize that she had just done it right a little earlier.

Both those cases show the frustrating part.  It wasn't that Janey didn't get what the task was asking, I don't think.  But she wasn't able to make the mental corrections and steps to get it right.  It might have been a matter of motivation, but I don't think so---in both cases, she liked a lot how the program reacted when she got it right.

It struck me watching this that I would never, ever be a good homeschooling teacher for Janey.  I've realized this with my boys (although they made it very clear that had no desire to be homeschooled!)  I get frustrated far too easily.  I don't know how to teach, especially how to teach Janey.  There is probably a method that would work better than ones I try, but I don't know what it is.  And I just start thinking "How can she not get it?" and I know that's mean.  She doesn't get things because her brain is not set up to get them.  I don't believe it's all hidden in there someplace.  I think her brain has severe functioning problems.  She is able to use the parts of her brain that aren't as affected---rote memory, for a big huge one, and music, and gross motor skills and even fine motor skills in terms of technology---it was not that she couldn't manipulate the mouse at all.  But she can't learn new patterns easily at all.

I can accept in myself that I get frustrated with the autism.  No-one on earth, I don't think, could hear Janey's hourlong screaming spells and not be upset.  But the learning delays---I feel like I should have more patience.  I feel horrible that I get frustrated with that.  I guess it's an area where I should instead feel very grateful to her teachers and therapists, who have the patience in that area I do not.  And I do feel that gratefulness, but I wish I had that gift, the gift of teaching.

The lights

I have been upset lately by some of Janey's new habits. She is more and more into looking at lights, and getting totally caught up in them. A few days ago she came home from school and started playing with a toy she has that plays music and has lights that flash. She put her face right straight down on the lights so they were flashing in her eyes. I pulled her away but the minute I wasn't stopping her, she was back doing it. She is finding sunlight filtering in and playing in it with her hand forever if I don't stop her. It is scary to see---I always feel like she is slipping away from me, like she is falling off a cliff and I am holding onto her hand but losing grip. She is also calling people by wrong names more and more. It's like she knows people have names, but they are starting to be interchangable to her. I am called Daddy half the time, when Carrie was here she called her Nana, she calls her teachers whatever teacher name comes to mind.

I called the TILL autism support center today to see when there was a support group. I have resisted support groups with every ounce of my being, as I felt like I wasn't really in need of one, that Janey was different and I didn't need to talk to people with REALLY autistic kids. But I am being knocked out of that feeling. I do need to talk to them. There is one next week and I will go.

I have been very very depressed this last few days. Lots of things, but a lot of it is worry and fear and terror over what will happen with Janey.

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!