Saturday, March 01, 2008

Saturday Adventure, Part One

We went to Dinosaur Land today. Andy is in love. Joey liked the big shark. Overall, a hit. Unfortunately, its a bit of a drive for us to get there. I'm going to look into what else is around Winchester so we can make more of an adventure of it.

Friday, February 29, 2008

Meeting Interrupted

So off I slogged to school this morning, to talk with Joey's teachers. Here in the Old Dominion, special ed kids are sent home report cards like everyone else- and based on the "norm" of a regular classroom performance. Kind of. So although Joey is reading on a first grade level, writing sentences, and doing simple subtraction, he is not assigned a grade of "successful", but instead a line of "progressing with effort." The other choice is "needs improvement." Why is he not considered "successful"? Because he cannot answer questions consistently.

Remember that my kid has a serious expressive communication disability.

This is kind of like giving a blind child a poor report in reading because the child cannot see the page, even though they can read braille fluently. Give the kid in the wheelchair a poor report for phys ed, because the child cannot walk, even though they have a wickedly good throwing arm. No, I have a better one. Give the deaf child a poor report in language arts because, although they can both sign and speak, they cannot maintain consistent pitch or always pronounce a sound clearly and at consistent volume.

In other words, this piece of paper is, for us, trash. Wasted pulp. Someone call in the police, we have murdered a tree with malice aforethought. All it tells me is that Joey cannot perform at the same consistent level of a non-disabled peer in areas where he must use spoken language to prove his understanding of the material. Nuh.

But that's not why I'm blogging about this.

In the middle of this discussion, and the discussion of how to explain to Joey's family that this piece of paper tells us exactly nothing, another school employee wanders in, and notes that if Joey does too well on this piece of paper, they will start talking about taking him out of the self-contained setting.

Now, that is likely very true. And if he was getting really great grades, maybe it is something that ought to be considered. We are certainly thinking about giving him more time in an inclusion setting. However, it was not the bare statement that's really the problem- its the way this person says these kinds of things. It's like she's saying we shouldn't be striving to help and support Joey, because then "they" are going to yank service. The only person who has tried to yank service based on a piece of paper has been... well, her. There is a tone of "if your kid does too well, then he's going to get tossed." Excuse me? Because support is working, you're going to try to yank it?

If that's a warning, thank you. If not, shut your mouth and be civil for once.

Thursday, February 28, 2008

Update: Allergist

First, thank you Joe for your reassuring message about the lidocaine. I followed the doctor's recommendations for use to the letter, complete with saran wrap.

Unfortunately, it didn't work. I know the cream was good, because my fingertips were slightly numbed just getting it on him. But then they came at him with eleven hypodermic needles, and he let us know he was unhappy with each and every one. remember, Joey usually has a very high pain tolerance. Yikers.

He bled, but nothing swelled, so no allergies. The best we can figure, it is some kind of contact allergy, probably something found in the cleaner they use on the school carpets, or something in the carpet itself. We may never know, but the doctor was still unhappy with his rash- the one he has all the time, that doesn't itch, so she wants us back in three months.

He was such a little trooper- he didn't like those needles, but didn't move or scream or anything, just squinched his face and said, "Ouch! Hurts!" So I took him to the toy store and got him a new truck. He was so upset that his teacher let him hold on to the new truck when I took him to school. His ABA session was a disaster. He's now in bed after plenty of hugs and kisses, with his new truck. I thought the routine of school might be comforting for him. Now I wish I had just taken him home.

Wednesday, February 27, 2008

Wordless Wednesday: My Boy and Me (Joey)

Monday, February 25, 2008

Update: Mass of Tape

The nurse called to say its hopeless to try the test again, since the tape doesn't stick to my kid's skin (!?!). So I am to use products without dyes or perfumes, and the doctor will talk to me on Thursday when we go in for the needle-test. Neither Joey nor I am looking forward to that test. I have that lidocaine cream they tell you not to put saran wrap on, with instructions to put it on my kid and cover it in saran wrap. Lovely.

A Mass of Tape

Last week in school, Joey had a sudden and dramatic reaction to... something. He turned red but not hot, and got his prickly rash on his back. He normally has a prickly rash, I had it when I was a kid, too. It doesn't itch, it just looks not smooth. But this was a really angry looking prickly rash, enough so that the nurse called, and so we took him over to the allergist. We did one of those scratch tests last week, and he's not allergic to any of whatever they were testing. Today we were to start a patch test. This is when they affix tape to your back with little squares of stuff to see if you have a contact allergy.

So we went over, and they put these tape squares on his back, and proceeded to "reinforce" the tape with more tape, none of which was sticking to his back very well. She kept telling him to stand still to put it on, but the minute he moved, there were puckers and pulls, and I was just not very happy. Somehow in my mind I had envisioned more like that sheet tape they used on me in the hospital, which sealed things in. This looks like a joke.

I was assured he should go to school, but shouldn't bathe. Sponge baths. OK. I should take the tape off on Wednesday and bring him back on Thursday. OK.

I dropped the child off at school, told the aide who fetched him what was going on, and continued on my merry way.

Skip ahead to 3:45. One happy boy hops off the school bus and scurries into the house. I get the coat off, then check his back.

There, clinging to his back, is a ball of mangled tape.

I called the allergist's office. They acted remarkably surprised, as if this has never happened before. I assured them that the nurse placed sufficient tape on my son's back to mummify a rat, but no avail. I now await instructions from his doctor as to our next move.

The good news is his back looks perfectly fine.

I shall keep you posted.

Sunday, February 24, 2008

Half and Half

Half happy, half pretending to be innocent...

Thinking of Niksmom

Lying in the dark
Try to take a breath at dawn
Hear my lungs gurgle

Thinking of Niksmom
Hope her week goes really well
Nik is a cutie

Reading my blogfriends
Wondering about playdates
What will it be like?

Andy coughs in bed
Dad gives him cough medicine
Sound of silence

School in the morning
Cancelled for allergist test
Joey will be so sad

Little feet chill me
I rub his back for comfort
Both his and my own

(Have a good week Niksmom. Hope we get some answers.)