Down in the Dumps

Warning: self-pitying vent ahead

I'm up too late, tonight, seeking solace in reading other bloggers' thoughts. I feel as if almost every day someone says to me, "I don't know how you do it" I usually say something about caffeine, or that I'm lucky the twins are very mellow. Recently that mellow-ness is disappearing, which may be good for them, developmentally (I think!), but not for my ability to cope.

I feel as if I've hit a wall, and I can't find the energy and optimism that usually gets me through the tough parts. J. can't understand why B. cries so much, or why G. plugs his ears and cries in response to B's crying. J. acts out, and then I end up mad at him. It's not a great cycle to get into, but it happens at least once a day.

Going places with all three kids on my own is really, really difficult. Even with just the twins it's hard. I'd like to take the twins to parks while J's at school, and let them get some exercise. Both are pretty good climbers on playgrounds, but their balance and judgement has not kept up with their ability to climb.

They won't walk places with me...they go limp and lie on the ground, or try to run away. Occasionally one will walk well with me, but I can't risk it with two, especially if there are cars around. So they end up in the stroller, which they are out growing. What will I do when they don't fit in the stroller? Right now my plan is to find a bigger stroller.

The twins hardly eat any foods that are really food, if that makes sense. I know this is common, but I'm not sure what to do about it.

My husband says maybe we are at the hardest age right now. Once the twins can communicate better, and when J. is old enough to understand the situation better, things will get easier (we hope) And, most likely, they will graduate from the stroller in the next couple of years. I remember when I worked at a private school for kids on the spectrum, almost all of the kids would follow along when we took walks through the neighborhood. There was some bolting, occasionally, but I don't remember many kids lying down on the ground and refusing to move. So maybe that's a toddler thing.

I really look forward to being able to take walks with all the boys, and I've got to believe it'll happen.

Usually I fixate on the bits of progress I see, and that keeps me going. G. is a riot these days, saying new words all the time and trying his best to sing the alphabet song. He is replacing "Oh, no! Careful!" with "Okay!" as his favorite utterance. B. has taken to quietly reciting the alphabet, but almost without moving his lips (I don't know if it's progress, but it's interesting to watch). J. is really liking Pre-K, and is asking tricky questions like "Do clouds sleep?"

I feel a little better having written this. I'm thinking of finding another college student to help us get out of the house more. With another adult I can actually work on the walking problem, and go to playgrounds, the mall, etc. Something needs to change to get us back to our old happy state.

Backpedaling on the Previous Post

Okay, my last post sounded like the publisher had slipped me a little cash, but it was truly how I was feeling at the time. By the time I finished it, I was a bit disappointed there was no mention of valid non-ABA approaches, such as floortime and RDI. Although I should check the publication date, because I don't know what form they were in when she was writing.

I think I'm still in the "Somebody please tell me what to do" post-diagnosis flailing stage. I can see how people start plunking down a lot of money to consultants and doctors, because you feel like you need to do something FAST. When I read about DAN doctors, part of me thought, we've got to see one of those. When I read about RDI, I wanted to sign up (still true). The ABA thing I go back and forth on. Initially I was absolutely not interested, but now that I've been trying my own thing for almost a year, I wonder at times if it could be good for B. Not thirty hours a week, but maybe some kind of ABA-lite.

I'm trying (once again) to take a deep breath and look at the big picture. When I first figured out we were "on the spectrum", I knew the kind of approach I felt comfortable with. I started doing what I thought was best, basically some sensory integration, PECS symbols all around, sign language, and lots and lots of interaction. I still believe in what I'm doing, the root of my doubts is that I think B. needs more.

We are starting our private OT and speech in the next few months, and I think that might help me see which direction to head in. I've met the OT twice, and have a good feeling about her.

In any case, I still think that "Let Me Hear Your Voice" was a good read, as long as you also read a lot of other books along with it (and what parent of an autistic child doesn't?) Deep down I'm still a touchy-feely, floortme, RDI type parent who's trying to keep an open mind.