Showing posts with label Freaking out. Show all posts
Showing posts with label Freaking out. Show all posts

Saturday, September 15, 2007

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.

Saturday, May 5, 2007

MRI Trouble

This is the worst weekend of my life. Yesterday someone from the developmental pediatrician's office called and said, "I forgot to tell the doctor that you called about the MRI results, but I'll tell you what it says."

I wasn't really processing what she was saying, but first she said "otherwise normal", and I just heard the word "normal" and started to relax. Then she said "I'm trying to look up this word...hypomyelination..." And she said "Don't tell anyone we had this discussion, I'm just clerical". Now I keep thinking I should have said, "Stop talking, let the doctor tell us!"

Anyway, the doctor had already left, and we just have this word "hypomyelination" to think about. Googling it led me to things like muscular dystrophy, so I'm trying to stay very, very busy, and pretend I've never heard the word.

But I don't know what to think. G. is the one who is saying words, and smiling at me, and pointing, and laughing at silly things. Could he just be missing some myelin, not losing it? And if the twins are identical, how could this be on G's MRI and not B's? Although a lot can happen after the egg splits.

It seems to cruel that G. would have autism and also some problem with his myelin. In my googling, I couldn't seem to find any benign myelin problems, but I did have to get off the internet at a certain point, just to save my remaining sanity.

We don't know how to page this doctor, but it just occurred to me that I have an email address. I'm going to try emailing.

To anyone who might be reading this, would you find a way to page the doctor if you were me? My husband has decided it must be something benign, and thinks we should wait for Monday.