Saturday, May 05, 2007


I now have our first hint at original, non-scripted, totally spontaneous speech. Whenever someone spits (or spits up), or in fact when anything comes out of someone's mouth, Joey calls it "waxing." We have no clue why.

Andy is still throwing up. We had an unfortunate performance at dinner, and Joey immediately got upset, since he doesn't like messes: "Andy is WAXING!"

So when everyone started calming down, and all that was left was Joey's perservertation ("Andy is waxing.... waxing, Mommy... Andy's waxing!") we asked: why waxing? What does "waxing" mean?

"Joey," Allan asked calmly, "does 'waxing' mean you're sick?"

"Yes," Joey replied. He usually replies "yes" to a "yes/no" question. "Andy is waxing on the floor."

"Why is it 'waxing'?" we asked. Unfortunately, the response to this was so completely incoherent, I couldn't tell you exactly what he said... but it obviously made sense to him.

So "waxing" it is.

Special Ed Games, Part 354

Joey went over to the elementary school this week with a couple other kids who are going over next year, to check it out (andbe checked out). I got the word the day before. Not much time to prepare a little guy for a big event. They slapped a sticker on his back to identify him, and off they went.

He had a pretty good day, but when he got back to his own school, he walked into a pole, then got upset that his sticker got torn. then he was upset about sing the bathroom (not his favorite thing to do in the first place), and ended up not eating much lunch, but was apparently able to join the class at the table for milk.

I replied to this narration of events with a bit of surprise that they were surprised. They turned his schedule upside down, with practically no notice. Fortunately, it was ABA and OT day, and I got him mostly reigned in, but I know he was upset because he wouldn't talk about it at all, not even with yes/no questions. The therapies headed off the brunt of the repercussions by immiedately providing familiar structure and specialized sensory input. He's had a pretty good week, just still not talking about his "adventure" and a little persnickety, nothing I would consider major.

The teacher's response was that it coudn't have been the change in schedule, because he was so happy during the day in the new school: "So in my view the trip and change in schedule were not the causes for the breakdown because he seemed happy and flexible the entire time we were on the bus and at Hugh Mercer."

Doesn't this person realize that when she makes these changes, it impacts us here at home? That he can hold it together in the moment and even at school, but that overload results in breakdown at home? What is the deal here? If this trip ha been on Tuesday, when all we have is speech, instead of Wednesday, it may have been days before Joey was back on track and not hair-trigger for meltdown.

Meanwhile, Andy was doing better yesterday, but today is back down. I've called the clinic. We'll see if we get new meds.

Thursday, May 03, 2007

The Good With the Bad

Joey had an excellent extra-primo day today. This was a bit of a surprise, since his schedule was all screwed up yesterday by a field trip to the elementary school, but I'll take it. :) His ABA therapist said he worked really hard for her, and then his OT was really happy with him- they are making a special project that requires cutting, and apparently he's doing it all by himself- and then our music lesson was brilliant. In the past, Joey hasn't wanted to watch and focus on the teacher, he's just wanted to bang on the drums. Today, he paid attention pretty well and followed the lesson along, and played the rhythms (or at least tried to). I am so proud of him! He even alternated the sticking! What a star!

Andy, however, was terribly sick all day. He threw up until about 4 this morning. He kept down some juice and toast for me during the day, but I came home from therapies to a report of a baby throwing up. He slept a lot. He just looked awful. I took him over to the doctor. We have a set of clinics in this area that take walk-ins, and we use them a lot for when the boys are actually sick, because trying to get in to see a doctor around here is always a couple days' wait. I don't know about you, but I certainly wouldn't want a pounding headache-ear infection for two days before I could even get in to a doctor; why would I make a 2-year-old wait two days? I'm probably the kind of parent most docs hate anyway- since my boys can't really tell me what's going on, if they act in certain, unusual ways, I take them in. Tell me its a virus if that's what it is, but please check them, just in case. I think I've been "wrong" once- and two days later, we were back with an ear infection. :P

So I take my bundle of dead weight over to our usual clinic. The problem with walk0in clinics is you never know who the doctor is going to be, and they have a rather high rate of turnover and musical-chairs. However, I've never been outright refused service before. They've hired someone who won't see children. What's up with THAT? At a walk-in clinic that a good many folks use as primary care? You're joking, right? But no- I was told to call my pediatrician (why would I be standing in a walk-in clinic if my pediatrician would see me at 7 o'clock on a Thursday night?) or go to the emergency room (um... the kid isn't in mortal danger. He just needs you to look in his ears). Fortunately, there's also a location in the next town over, so we called ahead (in case I ran into traffic and got there after closing) and off we went. Those people saw us just fine. Double ear infection. Start a new round of Zithromax and see what happens. Woo-hoo!

So far, his fever seems o be down, and he's sleeping, and hasn't tossed the medicine back up. Knock on wood, I think he might get some real rest tonight!

Going to be a Long Night

We had a Special Education Parent Advisory meeting this evening. This is a meeting where parents of kids with special needs are supposed to meet and advise the school personnel about what the school needs to be doing to help these kids. What it actually entails is the school personnel running their mouths as long as possible until the meeting is adjourned and the same five parents can go drinking together and complain about school personnel. I am the Fearless Leader (Chair) of this glorious event. hree years ago when I took on this mission, I thought I could do some good. Oh, the naiveté.

Only one other parent was game for drinking tonight, so we hung out and chattered about what summer was shaping up to for us, and then I went home... to find that I have a child that has been upchucking since bedtime. So about every half-hour, there is this funny cough throught he bay monitor, and I'm off to clean the room again. I have no idea how such a little child can hold so much fluid. But it just keeps coming.

So I'm goign to read some blogs and wait it out- at least until Blankie comes out of the dryer.

Tuesday, May 01, 2007

A Day Against Disabilism

Every day I am amazed by the rampant disabilism in special education. Here is an education system that is supposed to be designed to help, to support, to give these kids a chance to live independently and get an education; but instead you get full-pitched battles for resources that are not only limited, but designed to meet needs your kid doesn't really have (and in fact, I am finding most of the kids in the system don't have.)

Special education here is designed for severe mental retardation- so long as you don't also have a physical disability. We have a brand-new school here, an upper elementary built from scratch over the last two years. I have a friend who has two severely physically disabled children- whether they are mentally retarded as well is a matter of debate, since their physical disabilities make it impossible for them to acquire speech- and they are debating whether or not to send them to the new upper elementary school. Apparently, the special education classroom would have to be altered to accomodate them because of their wheelchairs and physical therapy needs.

Why? These people were aware of these kids in their system when construction- and even design- began. Besides, they likely won't be the only kids in wheelchairs they'll ever have. Why, in this day and age, would you design a BRAND NEW SCHOOL that is not fully accessible?

Now, let's go back to the speech thing. These kids' mouths are not formed properly, and speech is probably physically impossible for them (I defer to her expetise of the mom in this matter; I don't know the particulars). Little attempt has been made to give them an alternate form of communication. You'd think the school would work hard to give them some form of communication, even if it is simple switches or large buttons with pre-recorded phrases, so that these guys could at least communicate some of their needs. I am thinking seriously of buying such buttons for them for the summer, and having my cousin's boys (who are about the same age) record simple messages (like "yes, please!" and "no, thank you") and see if these guys would use them. They are 8 years old, and have no way to tell their mom they need something, other than tugging on her clothes. And why? Because they can't speak, they're not supposed to communicate?

These are the challenges of two boys who have obvious, clearly visible disabilities. People know they need help, it is blatantly obvious they need skills, accomodations, equipment, nursing care, aides, respite, the works. They have terrible problems getting these things. It took them years to get medicaid waivers. The school doesn't recognize their skill needs, and they have no academic goals for them- any progress is considered sufficient. I can only assume that is because such severely disabled children are not usually expected to live to see Upper Elementary- by people without disabilities. They are "low functioning" and will "always be dependent"... so the attitude- more or less subtle- is, "why waste resources on them"?

Skip to my own child. Joey talks. If you are not familiar with Oobi, Little Bear, Pinky Dinky Doo, Blue's Clues, Cars, Toy Story, and Franklin, you might miss that every word he says is based on words he's heard before. He likes other children, and has some stock phrases to start contact, but then he doesn't know what to do, especially if a children reacts in an unusual way- which is any way other than how Andy would react. He knows his letter, his numbers, his colors, can write his name, and can match and sort and make patterns- if you can get him to sit down long enough to show you. What chance has this child, whose disability is not so apparent, have at getting accomodations in a world that wants him to be invisible?

At least, they say they want him to be invisible- but then won't address anything that is actually visible, or do it ways hat would be sublte and acceptable in a "mainstream" environment. Needs to chew? Gum is a no-no, lets give him a chew toy. That chewing gum is far more "invisible" than having a plastic tube in you mouth is beside the point. And who needs brushing? That takes too much time, it has to be done every two hours, after all! Food issues are the parents' problem- we put the food we are serving in front of him. But you want to send in food? That's too much work for the teacher and aide. Social skills? Toss him in the gym with the HeadStart kids and hope he figures it out! After all, that's how other kids learn social skills...

And these people are special educators- he's in self-contained environment, not even an inclusion setting!

What is disabilism? It is an attitude that people who are not facing the challenges of disability are inherently superior. That their ways of coping and interacting are innately superior and preferred. That people with disabilities are, somehow, not as human, and have less right to try for independence and education. That people without a disability somehow know what is right and proper for people who do. That people who need support and accomodation are somehow children; or if they are children, that they are babies.

It is also the assumption that people shouldn't need to be accommodated, shouldn't need support, shouldn't have "special needs." The shock special education personnel keep displaying that their kids might have special needs is discouraging. How far would their day get without their coffee? Their few minutes of favorite music? Perhaps a cushion on the driver's seat, or hot water in their shower? Perhaps they like their food a certain temperature? We all need to be accomodated in certain ways to cope with living and functioning. To say my child's accomodations are unacceptable, just because they are unusual or different, is ridiculous. To deny him education in learning to self-regulate is equally ridiculous. It is discrimination.

Sunday, April 29, 2007

Another Happy Sunday

With a dose of allergy meds, the boys went to church this morning after all. The Sunday School teacher and I had a little chat. Apparently, they've given up on days when the director isn't here to be his aide, and he wanders about and does whatever. Not what I wanted to hear, but they haven't tossed us out yet, so we'll keep working on it. It would be nice to have an aide in there for him, because with his gum, he is able to sit and attend- but still needs a little reminding that the rules apply to him. They also now have too many kids in there to keep track of his sensory stuff, and having someone in there could make sure he got his vibrator or his gum or his chair cushion when he needed it, and teach him to get these things for himself. But he makes it through, he's in with kids his own age, and nobody's gotten hurt. So that's a good thing.

The boys were still antsy, so I took them out to Wakefield. This is a regular trip for us, I'm sure I've blogged about it before, but I'm no going to swim through right now to check, and for those of you who just pick up blogs where they are, I'll save you from wading as well. Wakefield is the birthplace of George Washington. It is a working colonial farm, with animals and everything. It's also a pretty safe place to let the boys run, and not a lot of people go there. So we go there a lot when the weather is good. I took some pictures today of things to make up a nature walk list, and while I was at it, I took lots of boy pictures and movies. They like seeing themselves on the TV, so I thought I'd make a little DVD. Besides, its calming. This is the calm before the week's storm...

We've decided that putting Joey into the speech and OT camps is the best option for him. Its going to be a little rough on me, and I have to figure out what to do with Andy (as in, what we can do together, not what shelf I am going to put him on), but if he can do intensive therapy this summer, maybe we can at least get him going with using his sensory book himself, make sure he can dress and undress himself, and do some other things in groups and independently, that will help him in kindergarden. I can also control his schedule better, so I can do the brushing and work on the oral issues (ie, get him to eat more foods). So this week I'm going to call up and say, "Since you guys were ammenable to this- this is what will happen." I expect them to promptly start having small bovines. If they don't, you'll be sure to know.

Because the boys can run at Wakefield, I end up taking a lot of photos of their backs. It seems strange for them to be walking on ahead like that. Most places, I have to have them firmly by their hands, so I mostly see the tops of their heads. At Wakefield, they run on ahead, checking out their freedom and the world around them. My boys get a chance to grow up a bit.

I like going to Wakefield. I think they do, too.