Turns Out I Still do Have my Password

See there? I can be funny. Or something close. I’ve been very, very busy, but tonight I am struck with an urge to talk about my actual life and not just summarize it in 140 characters or what have you.

The thing about blogging is that if you don’t do it for a while, you forget how to do it. I go to sleep at night with little snippets of sentences parading in my head, but no full thoughts. Makes it a lot harder to sound coherent when I finally sit down here.

Oh well. Incoherent is what you get, I guess.

So how have I been you ask? I’ve been good. I’ve been running my hyper-local parenting site. I’m in the midst of planning a big dinner and a charity event as well, so it keeps me busy. But good busy. I’m stretching myself. We’ve got franchises up in Lafayette, Jefferson Parish, and Smyrna, GA and I’m busy working with another mom getting her site started. It’s fun and exhausting and pretty awesome.

And the boys? Well, the boys are a mess, but nothing too dramatic.

Charlie is doing very well in some areas. I’ve slowly been reintroducing ABR into his life and he enjoys the one-on-one time with Mommy. The techniques they do have been fine-tuned over the years, so he responds even better and even faster than in years past. I look over and admire his sitting almost daily.

He is still very resistant to actual work at school and we’ve made very little progress in getting him to do much in that area although he does try if he’s feeling up to it. If you hold his hand, he can write his name. He’d rather not do work though. He’d like to hang out, visit, listen to music, and generally be a social butterfly. He was invited to a typical kid’s birthday party the other day and we went and had a very nice time!

His big issues these days are the things that bother a lot of kids, but with Charlie there are layers that keep me from figuring things out right away. He’s been having reflux, which caused night waking. It took a lot of fiddling to figure out that some slippery elm before bed makes him sleep and eat better. Easy! The second issue is less easy. He has chronic sinus infections. A CT scan revealed this and he seems to be in a constant state of stuffy nose, post-nasal drip. Nothing we try seem to help for very long. The kicker is that it makes him drool a LOT more. He drools more at six than he did at two and three. So my goal is to get him to the ENT to see what our options are there.

And the twinnies? There are doing their thing. Not much talking, but Louis is trying very hard. August is less interested, but that’s his personality. Louie is super-social man. Talking will help him with that. August is less so. August has social needs, but they’re quieter–he wants to play, he wants to snuggle. He’s my sweetie. Our goal is to have Louis continue at his current preschool and send August to Early Intervention preschool. August will shut down if there’s a chance to–we need him in a small class situation so he doesn’t have that option.

And that leaves Rexie! Guess what? He’s not so good at the talking either. I know y’all are shocked. I have enrolled him in Early Intervention as well (I’m four for four here), and he’ll be starting at the same preschool as Louis in the fall. Scary thought: one morning a week I’ll have no children in my house. I mean, realistically that will probably never happen, but it’s an interesting possibility. I’m also going to be living in my van with four kids in three different schools. Good thing I like my van.

So that’s it. No fairy tales at my house–just hard work, lots of therapy, and some amazing little boys.

I’m smiling as I type this.

Til next time!

o

 

Fear

Fear–such an obvious topic for a special needs mom to talk about, right? I mean, I should be filled with The Fear–will my child walk? Will he hold a job? What will happen to him when I die? But here’s a confession: I cope with all of these things using the Scarlett O’hara method–I just don’t think about it. Maybe not the best solution, but I’ve never actually solved a problem by worrying about it in advance and I spent a lot of Charlie’s infant days worrying abut things that never happened or if they did happen, it was as big a deal as I thought.

So basically it’s taken me a paragraph to tell you that it’s Charlie’s fears that I’m thinking about today.

Charlie’s a tough little kid. I doesn’t cry at blood draws. He handled a bunch of Botox shots in a way that I don’t think I could have. He’s very tough, but lately I’ve noticed that he’s gotten extremely fearful.

He used to love the water, but now he’s not capable of enjoying the pool at all, which makes me very sad. He will sit in the bathtub, but if I lie him down in the water, he is frozen with fear and claws at the sides of the tub.

The other day I sat him on the bottom step of our porch and he twisted awkwardly to grip the step behind him. He’s really good at sitting on a bench with feet flat, but when put in a new situation, he freaked out.

I’m glad he has awareness. We spent years dealing with medication fog, and it’s positive that he’s taking things in and processing them. I don’t want him to be scared of the world, though. Right now the twins are in a pulling up phase and about a million times a day I say, “It’s OK! People fall. Just get back up.” How can I teach Charlie that same thing?

Caution is good, but a four-year-old shouldn’t be fearful. I know he’s working with a body that doesn’t always do what he wants it to, but I want him to try. I want him to push. If he doesn’t, I can’t imagine he’ll go very far. I don’t know if this is some sort of stage, or if there are deeper things going on that need to be addressed.

So often I find myself sitting around wondering what the next step is–trying to find the path when it’s not clear. It’s one part intuition, two parts Google search, three parts the wisdom of others, and praying like hell I don’t screw it up too badly.

Boy not looking at the camera.

Too busy booging to look at Mommy's camera.

Sleep Success

Well, since my last bedtime post, we’ve been working an tweaking the ritual, trying lot so new and different things and also reading a lot on children and sleep issues.

Two things stood out for me in my reading: the first, was the neurologist’s assertion that some brain injured kids don’t need as much sleep as typical children. I’d never considered that. The second thing was an article that said that trouble falling asleep is most-like an issue related to routine.

I went with the easy way out first–I enforced zero bedtime. This resulted in several nights where he was up past eleven. Eventually he would whine or fall asleep on the floor and we’d put him in bed.

Then he’d sleep half the day at school, which was the opposite of what we were going for.

Then, I switched things up and put him in bed at “bed time,” but letting him play with whatever he wanted. This went well, but he was still up til almost eleven–an improvement, but not a great one.

Further research revealed that problems with going to sleep are often a result of not having a good bedtime routine. Sigh. I’m not a fan of routines. I also find that the more pregnant I get, the less I feel like doing anything in the evening.

But we did it anyway. We stuck to a very rigid 9:00 bedtime, which is later than most four-year-olds, but acceptable to me. We follow the exact same routine every evening.

Guess what? It’s working.

He’s falling asleep before 10:30 every night. He takes about a one hour nap at school. He doesn’t wake up in the middle of the night crying.

He’s also in a better mood during the day, participating more in therapy, and just generally seems happier.

It’s not a miracle cure–we’ve had a bad night or two, but it sure beats the night after night of getting up at two and three in the morning, and the hours of screaming before bed.

I’ll continue to keep y’all posted, but MAN is this better than before.

PS: I finished this post last night and OF COURSE we had a rough sleepless night–luckily, we knew what we’d done wrong, which makes the sleepless nights a lot easier.

 

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