Saturday, April 28, 2007

And so it goes

Usually on Saturday evening, Joey and I saunter over to the church to listen to the band. Joey likes music, especially involving drums and guitars, and since there arent a lot of people at the Saurday service, it gives us a chance to get hi used to the sanctuary and going to church and stuff without having too many people jostling him and making him nervous.

But tonight he would not sit down. Even when they started, all he could do was track, track,track. Track the banister, track the pews, track the cords for the guitars, track a seam in the carpet. Then he wanted to run out to the street, out into the halls, up and down the main aisle. Track. track, track.

This means one thing:

Joey is coming down with something.

This is really depressing, because we just finished a round of antibiotics because he had never recovered from teh croup. It means if he goes to Sunday school tomorrow, he will probably have a bad day and need the director to come be the aide again. We might not go at all, trying to head off the storm. He's already missed a week of school, so his schedule has already been a complete mess.

On a more selfish note, it also means I didn't get to sit with him for the half-hour to listen to the music while hugging a Boy- something I really could have used this week.

A Reminder!

Blogging Against Disablism Day, May 1st 2007

May 1 is "Blogging Against Disablism Day." Let's all raise the call that people with disabilities are, first and foremost, people. I look forward to spending a lot of time online on Tuesday, reading everybody's thoughts and ideas about what it really means to be human- for everyone.

Friday, April 27, 2007

Who are these people, and what did they do with my IEP team?

Mom and I walked in to the strangest IEP meeting I have ever been to. This was the meeting for Extended School Year (summer services). These meetings have been a right royal fight for everyone here every year. Usually its a lot of wrangling to even be able to call a school person for advice at any point, and they complain as they fill out the paperwork.

Not this year.

Apparently, Joey's behaviors have been unavoidable this year. He's not a danger, but the slamming fo doors, clicking, and tracking have apparently been well noted and been very disrupting. It was decided that he qualified on that ground alone. I was shocked. Not only did he qualify, but I have a peice of paper here that says he will get 2.75-3.5 hours per day, five days a week, for eight weeks! I know th edoc wants 25 hours a week, but folks, this much ESY is UNHEARD OF here.

I have heard there are at least three other parents headed to mediation right now. I wonder if that has a bearing. OR maybe someone wants to try to put together a real summer program, and this gives them an excuse. Or maybe the immanent retirement of our esteemed director of special ed. Or maybe someone finally told these people to shut thir mouths and open their brains. Joey's teacher even stood up to our mouthy OT. It was incredible. I was beside myself.

So we have the documents. We're hoping to pin down the exact nature of the program before we put our names to it. We know the amount of time, the duration, that sort of thing, but what exactly will this be? The camps I want, or an in-house program? We made clear that we need to know soon, so I can reserve spaces.

Thursday, April 26, 2007

Life is like a bowl of cherries

I don't get much sleep in the week before an IEP meeting. Even with one like this, where I have a plan, I get insomnia. When I get insomnia, I often end up with bad analogies and t-shirt slogans. Then I torture you with them. ;)

This one is "what its like to wok with our school OT.” I know disease references might seem offensive to some folks, but they do get across the sense of importance of the situation.

You're sick, and you suspect there may be something wrong with your endocrine system. There is only one endocrinologist covered by your insurance, so off you go. He does some tests, and tells you that you have diabetes. When you look at the results of the tests, they look bad, and you start some treatment for diabetes.

After a year, your test results come back with slightly better sugar numbers- let's say, 250, when you now know you're supposed to be under 90; but its better than the 300 you were. After a small lecture on how painful needles can be and the risks of insulin, you start a little insulin. In the meantime, another doctor you're seeing for a skin rash looks at your records and suggests you see an out-of-network endocrinologist who specializes in diabetes (note- for those of you unfamiliar with diabetes, you can get a skin rash if your sugar gets too high). Doubtful that there is much else to be done, because the doctor has been telling you that everything necessary is being done, you decide it can't hurt to have a second opinion.

To your shock, you are told that yes, you have diabetes... and pancreatic cancer. As you look over the tests, including one that most endocrinologists consider standard, but your other doctor didn't even do, it is practically staring you in the face.

Your other doctor remains skeptical, so you decide to get a third opinion. That also comes back screaming "pancreatic cancer!" (which would, of course, explain why you're diabetic). You take these reports back to your doctor, and note that both of the other endocrinologists recommend cancer treatments. Your doctor replies with bringing you some literature about cancer treatments, while telling you that these treatments are all extremely painful and risky, and you *could* try them, but why bother? Your sugar is improving with the treatment you are getting, and its the diabetes that needs to be controlled. You insist on at least some treatment for some of your other symptoms that have been revealed by the other testing, and to get your sugars under control. The doctor reluctantly gives you an increase in insulin.

In the meantime, not being an idiot, you begin cancer treatment with one of the other doctors. In trying to get your sugars under control, the new doctor suggests you might want to eat certain kinds of foods that are low in sugar. You take this to your first doctor. They freak out. They tell you that you need carbohydrates in your diet. They scream something about Atkins and South Beach diets. They tell you the cafeteria can't handle this particular request because of dietary rules. You note that the new diet seems to be helping to control your sugar, so they contact your second doctor and ask them to change their recommendation. Needless to say, doctor #2 is highly offended, and responds that dietary control of diabetes is extremely common, and her first duty is to her client, not convenience. The first doctor permits the diet, but still tells you they don't like it and you should eat plenty of carbs. You go to their boss. That boss tells you no one has ever complained about the endocrinologist, and he has to be able to treat pancreatic cancer, because the law says so, and when the boss talked to the doc, the doc seemed very enthusiatic about the new diet. He won't pay for the treatment you've been receiving from the other doctor, period.

It has now been another six months, trying to get this all in place. You first doctor does some tests without your knowledge. At your next appointment, he presents the results, saying, "You're are now doing so well on the insulin... wow, 100! You may not need that insulin anymore! And look! Your cancer has been cured!"

And I'm supposed to have confidence in this person?

Wednesday, April 25, 2007

Round 2

Oh, yes, I got the email this morning: "I didn't say that! I said we have to be careful interpreting the results!"

Right. Does that mean you don't show care in interpreting the results of other tests and evaluations?

This is NOT increasing my confidence in this woman. It certainly shows me that she is 1. Not familiar with this test and 2. not familiar with how to properly consider the results. She's surprised that we would want to know this information, to look for gaps in Joey's skills. Why on earth would we want to know this information?

I thought we were about to write an IEP?

Tuesday, April 24, 2007


For some reason, the school OT just can't say the words," yes, ma'm." I can only imagine it is a matter of pride. If she doesn't fight me on every single request or suggestion I make, she loses some kind of brownie point somewhere. She keeps sayign she wants to get along with me, then won't STFU.

I have requested the school evaluate Joey using ABLLS (Assessment of Basic Language and Learning Skills). It is a test designed to check on skills needed for 5-7 year-olds to function. It is commonly used to test preschoolers, to give educators a gauge of the skills needed for elementary school, including kindergarden. It also is often used to design ABA programs. It is not a comprehensive test, but it does test skills that are not covered in other common gauges, such as the LAP-D, and is designed specifically for kids (like Joey) who have language problems or delays. Back in September, I kept asking what skills Joey would need for kindergarden, and was basically told "we'll take care of it." So I am already annoyed to discover there was a test they could have given him to find the gaps in his skills and address some of them. However, I am far more annoyed at the email I got from the %&$^#*! OT today. It basically says "well, he doesn't need to do all this stuff for kindergarden. It won't tell us anything his teachers don't already know. It won't give us an age equivalency or standard score. This is usually given to low-functioning kids." In other words, "What are you having us do this for? I don't want to bother."

Of course he doesn;t need it all for kindergarden. But he needs some of it, and this will tell us some of things he may be lacking. It will tell us some of his strengths as well as some of his deficits. It is a yes/no sort of thing- either he can do the skill listed, or he can't. Its not about age equivalency, it is about tracking actual mastery of actual, functional skills.

These teachers that know him so well had to be fought to get him goals for bilateral co-ordination, social conversation, and visual motor skills. They were shocked that he needs sensory accomodations. Joey is just a barrel FULL of surprises!

I asked for the test. They do it in the fall (why bother? The IEP is being written NOW). I asked for it by NAME.

The proper response is "Yes, Ma'm."