Monday, October 19, 2009

4am close up....Henry was awake, so I snapped a pic

Dr. said it might have needed a stitch, but as long as we keep it clean and he doesn't rub it, should continue healing "nicely".

Sunday, October 18, 2009

eye update

Well, it's a "rug burn" on his high cheek bone and three separate chunks of skin/openings on the lid. I had to con him into letting me clean it up a bit with a q-tip and water, but I definitely need to call the Pedi just to get it looked at since his eye is watering and it can't dry out at all.

Questionable injuries

Sam was playing "hide and seek" with MIL and his puppets, spun around and lost his balance (like mother, like son). The following pictures are the result of Sam's eye meeting the corner of the sun room chair. It's split and scraped, no damage to the eyeball itself.

Everyone knows I'm probably a little quick (okay, okay, no little about it) to jump the gun on dr appt. But when you get an injury like this one, I do take a step back. After all, nothing they can do about it. Stitches aren't necessary, I gave him Tylenol and he seems to be settled down. A bit leery, but settled nonetheless.

He has what appears to be a blood bubble on the lid and when he cries, it moistens and bleeds into his eye.

So, the question is whether or not to call the pedi in the morning to have him checked out or even to go to Urgent Care to have him looked at today.

Thursday, October 15, 2009

Lactose-free living

PediaSure and PediaSure Nutripals drinks are lactose-free. Which is great since it's about the only way I make sure Sam gets the nutrition he needs on a daily basis.

A few months back, my friend Susan told me about Breyer's having lactose-free ice cream. I was amazed because I hadn't seen in the store. Then again I wasn't really looking.

I found it and we started letting Sam have ice cream as a treat without worries that he was going to puke 30 minutes later.

Then genius struck last week after his IEP meeting. Chocolate PediaSure + Breyer's Vanilla Lactose-free Ice Cream = chocolate shake!

He gets three things: nutrition, treat, speech therapy......all in a small glass with a straw.

Tuesday, October 13, 2009

I'm a very lucky mom!

Most kids by age 4 are asking for anything they see on tv or in the store. Not mine. I'm not sure why though. Is it because of his delay? I don't think so because we'll go to the store, we'll look at toys, he'll like something, but he doesn't ask for it. He doesn't quite grasp the concept of Santa, probably because he's only done two visits with Santa and both were when he was very young. He doesn't even ask for things for his birthday.

Perhaps it's because he gets very little commercial-ridden television. We watch Nick, Jr. (formerly Noggin) and PBS Kids. Neither of which have commercials for sugar cereal, toys, or other crap.

We've generally tried to stay away from character toys, which living in the Orlando area was tough at times, but I'll bet he has less than 15 toys/plushes that are name brand. If he saw things like Spiderman or Transformers, it was at school or birthday parties.

Yet, he doesn't come home asking for it.

Maybe it's because he doesn't get a lot of things, maybe he just knows better than to ask. He's a very appreciative little boy. As my MIL put it, he doesn't care if you gave him a ride-in car or a box of new crayons, he's happy.

He'd rather have a wagon to ride in with his baby brother. He's discovering all of his old baby toys and showing Henry how to play with them. (some days better than others)

Mostly I think it's a combination of all three: his delays, commercial-free television, and he gets what he needs, not just what he wants.

Thursday, October 8, 2009

Sam's annual IEP

They started with the OT, and when she said that it was group setting, I kind of stopped the whole IEP. I started by saying to the teacher that I had challenges and that if we needed to talk after the meeting, that was fine. They let me go on. I let them know I wasn't all that happy with the program and that while I didn't want to be the pain in the butt parent, I felt that his services were being reduced even though he'd been making great progress. that the more progress he made, the less he was getting. Granted, that's what we want, but it seems that the older he is, the less services he's receiving one-on-one. And in order for him to continue on the same pace, he needs the same level, not less.

I told them that in the last 18 months he's gone from daily one-on-one services to none. That I understood we went from a phenomenal EI program supported by Arnold Palmer Hospital (Orlando's big children's hospital) and a school district with multiple elementary schools to a district with only three elementaries and one pre-k special ed program. This program is our only option right now unless I look at school of choice and make my own transportation arrangements. (which is something I may look into depending on the job hunt....if it meant a better program, I'd work 2nd or 3rd shift)

They responded by telling me that with a small class (8 kids) and already two adults, the kids are getting 1:4 help. When the OT is there, she has an intern, making it 1:2. They also sometimes have half the kids at gym, making it 1:1. I felt MUCH better after this.

Then they said they wanted to change his diagnosis classification. No one felt, after having spent 5 weeks with Sam and looking at his scores from May 08, that he needed the "developmentally delayed" label. They have now placed him solely in the "speech and language impaired" program.

This made my heart very happy that we could get rid of the PDD label for now, but sad because it was really something Eric needed to hear.

They all agreed that Sam's main problem is (and always has been) his expressive communication, but there is a receptive communication problem. Knew this, but okay.

The teacher said that she feels Sam needs visual cues for listening. Almost like he's still trying to learn to read facial cues. I said it could be that he had to read faces to listen before getting tubes that it's almost like a crutch for him. She said he sometimes doesn't respond when she talks to him if he's facing away from her. We agreed that some of that was probably selective, but that the majority of it was that he just really needs to face you to hear and understand what's being said.

I had every intention of asking for him to be retested since it's been 2.5 years and he's an entirely different kid. But they brought it up first saying they would redo it in the spring if I felt that we needed to.

We talked about kindergarten readiness for next year. And that's where I feel more of my frustrations came out. His program last year was ALL about getting every kid in the class ready for kindergarten, with or without services. They did a lot of academics, he was doing the Letter People, cutting/gluing/coloring/writing, even some math. The teacher admitted their program is basically a preschool for special needs kids. It's the only program in the district and right now Sam is one of the higher functioning kids, whereas last year he was middle ground.

The speech therapist gave me a few more ideas of how to get Sam's face muscles working harder. She also gave me an explanation of why my kid thinks he needs to shovel food in. With the low muscle tone, he's not feeling the stretch in his cheeks until it's bordering on way too much in his mouth. She said to use the electric toothbrush on the insides of his cheeks to get them stimulated.

Eric and I are fine with him going to kindergarten next year (w/ or w/o services) and repeating the following year. He turns 5 in July, so while he'll be ahead of the deadline (Dec. 1 in MI), but that doesn't mean he'd be totally ready. I told the teacher today, I'd be fine with him doing two years in her class then kindergarten in 2011 at age 6.

I signed my papers, happily that I got my frustrations out and that they understood where I was coming from.