For Living Memory

Katie McCarron is about the same age as my Joey. They might have gone to school together. They would have been in the same playgroups, the same classes, gone to the same parties; as they grew, they would have shared the same friends, perhaps met each other in college. My son and I have missed the opportunity to have this beautiful young woman in our lives.

Katie McCarron loved grass. So does Joey. They could have pretended to be lambs together.

HUg your children tight. Love them as they are. God bless Katie McCarron.

For Better or For Worse

I just love For Better or For Worse. Its a great strip.

Summertime Nears

I've been having some interesting conversations with some other friends who either have very young children, or very typical children. The complaint of the day appears to be Summer. School is out. What to do with the bairns? Ah, the stress of having to spend time with your little ones, while the days are warm and the sun is up early and to bed late.

From what I have gathered, the typical summer day for "normal" kids goes kind of like this:

Rise: Somewhere in the region of 9 am. If the kids are early risers, then they get up earlier, or know to play quietly until Mom gets out of bed. The 6:30-7 am rise for a school day is clearly relaxed. For preschoolers, the 8 am rise is relaxed to 9.

Breakfast. Most of the mom I know actually cook breakfast, or at least do more than tell their kids to get their own cereal. However, I understand that this may actually be unusual. At any rate, breakfast is served.

Hanging out. Perhaps they will go to the park today. Maybe a ride somewhere. Perhaps there's a special event in town. A trip to Grandma's is always good for an outing. If all else fails, that's what the TV and DVD player are for, or that video game console. '

Lunch. This apparenly can happen anywhere from 11 am to 1 pm, depending on when your bairns rise in the first place. Buy stock in peanut butter, jelly, and chips. Apple orchards are a good bet, too.

Hanging out. Going to the pool is a popular afternoon activity, as Mom gets a chance to chat with other moms while the little ones get cool and wet. Rainy afternoons- well, that's what that TV and DVD player or video game console are for.

Snack. Sometime during the afternoon, the hanging out is disturbed for consumption of sugary and/or salty comestibles, washed down by juice. (Yes, I know many of my readers will be offering actual healthy snacks to their kids. Most of my friends with normal kids don't read this blog.)

More hanging out. If one cannot remain at the pool until dinner, another activity is usually offered, involving the TV and DVD player, or the game console. (I think some of these people need to get that "no electronics until after 5" rule and get some creativity going for engaging these kids.)

Dinner. Mac and cheese, hotdogs, maybe something from the grill. Buy stock in Oscar Meyer. It's going to be BIG. Dinner being consumed somewhere between 6 and 8 pm, with no regularity to when exactly- eat when the mood hits you and the grill is warm enough.

More hanging out. TV and DVD or game console again. No surprise there.

Bedtime. This begins sometime when the kids feel sleepy, anywhere from 9 to 11 pm. Bath, stories, songs, tucked in, and off to dreamland, until tomorrow...

OR:
6 am: drop child at daycare.
6pm: pick up child from daycare.


Take, for contrast, what my summer is going to look like:

Rise: Between 7 and 8 am. No later than 8 am, but I would like to sleep in that long. Dressing ritual commences.
Breakfast: Eaten by 8:30 am.
9 am: OT camp for Joey. This will bein town, so about 10 minutes in the car. Take activities to entertain Andy while waiting for Joey.
10 am- consult with the OT.
10:30-11:30- playground. If it is raining, basement activities: blocks, trains, coloring, painting, something of that sort.
11:45- make lunch. Lunch must be ready by 12 noon. Lunch must be consumed by 12:30, because we have to be in the car promptly at 12:30.
12:30- drive to Speech camp.
1-2:15 Speech Camp for Joey. Activities packed for Andy.
2:15- consult with the speech therapist.
Tuesdays: More speech, 2:45-3:30pm.
Wednesdays: OT 4-5 pm.
Thursdays: OT 3-4 pm. Drum lesson, 5-5:30 pm.
Yet to be Scheduled: OT for Andy and Speech for Andy, once per week each. OT might be 11 am on Mondays, eliminating morning playground on Mondays.
1/2 drive back home.

Also yet to be scheduled: ABA sessions, probably 3 hours per week, to teach safety and communication.

Any spare time in the afternoon will be spent in the back yard or the basement, depending on weather and scheduling of presently unscheduled activities.

Dinner: Promptly at 6 pm.
6pm-7pm: Wind down. Yes, I will probably get out the TV and DVD player, or have them play games from Noggin and Sesame Street.

7 pm- bedtime. Bath, story, song together. story and song each seperate. Lights out. Joey will play in his window until the light fades. Andy will play until he passes out.

On weekends, each and every Saturday I am not working (I don't get a lot of work in the summer) will be taken up by a "field trip." Sundays will have Sunday school and a ride to a closer destination or visit to Grandma.

There will be no room for variation, unless someone gets physically ill.


When the conversation turns to "summer woes," I realy have nothing to say. What they are talking about sounds like a wonderful, relaxing life to me. If I mention what my days look like, they glaze over and start talking about the pool. I can't take my kids to the pool by myself.



My friends and I share one thing: we both are holding on for Fall, when kids go back to school. In their view, they will get their lives "back". In my view, I will get two hours twice per week to clean, vacuum, do laundry, cut the lawn, try to get caught up on repairs, and at Christmas, clean and decorate and bake cookies (mmmm... cookies...) At least I will get lots of time to play with Andy. I am already putting together a otebook of ideas for portable projects and activities that can be done in waiting rooms and office playrooms. :)

Between the Rock and the Hard Place

Well, the jury is in... Andy's articulation problems, according to the insurance, are an educational problem tha should be addressed by the school. According to the school, he isnt actually developmentally delayed by the problem, so it ain't their problem. I can't send him to regular school when no one can understand a word he says. Where have we done this dance before?

So please, everybody buy t-shirts. :P Anybody want to have a bake sale?

Just some thoughts about gratitude

I've been reading a lot of blogs lately, and especially Musings of a Highly Trained Monkey (did that work? I'm new to this linking thing). Its a blog about working in the ER, and it has a lot of insights about different kinds of people who present themselves to the ER. Around here, ER bashing is a spectator sport. The local hospital is infamous for poor service, overpriced doctors, and sending people home with inappropriate medications. In fact, there's a lot of bashing of other people and complaining and whining that seems to go on here and there in places I've kind given up visiting because now that I have Autism Hub blogs to read, and there is a LOT less negativity there. But anyway, on to the random thoughts...

I will never forget the people who came to take care of my Joey when he had the croup and was turning blue. Those were incredible, amazing people. I hope they aren't too surprised when I call and ask if Joey can come see the ambulance station this summer, and thank them personally. They hopped right in, made him feel comfortable, let him know everything was going to be just fine, so that for Joey, it was just a fun adventure by the time we got to the ER. The ER nurse was hilarious. He knew a freaking-out-parent when he saw one. Even the nurse who was changing sheets stopped to talk to Joey and try to find cartoons for him on the TV. These people took a situation that was potentially terrifying for my child, and made it into something that included laughter, smiles, and new friends. They made a situation that was terribly stressful on us and made it a walk in the park. I have no idea if they thought I was some stupid person calling 911 over croup. They seemed to be more interested in the fact that they had a child in their care, and to make that child comfortable. We are forever grateful.

On that note, I'd also like to thank the lady in the grocery store the other day who was trying very hard to get Joey to talk with her. He wasn't feeling that great, so he was echoing the questions instead of answering them, yet she remained pleasant and undeterred. She didn't ask, she didn't frown, and she didn't treat him like an idiot or a spoiled brat. She took him as he was, and when his own words failed him, she provided some, without being annoying.

I'd like to thank the bongo drummer at our church who this last Saturday let Joey get up and actually play the drum with the band while they were performing. You could see that Joey thought this was the coolest moment ever. This person has started bringing kazoos to Saturday servicce for the kids. Joey now has two. He plays them all the time (and so does Andy, when he gets hold of one.)

I'd also like to thank the lady who works for Enterprise at our local body shop, who called to get an appropriate vehicle for us and made sure it was waiting for us when we arrived on Tuesday, knowing I had two sick little guys I had to bring with me. I just transferred the carseats and we were on our way. In that vein, I'd like to thank the police officer and the lady that rearended us for being so polite and making a bit of fuss over my boys in making sure they were OK, and telling me how handsome they are. I know how hard it can be to stay nice when you're having a hard day.

And I'd like to thank all the folks who have been leaving me comments here. Sometimes it is just nice to know you're not alone out here.

Recovery from Waxing

So Joey sems finally on the mend. We even withstood our ABA therapy for the day, and ate solid food.

Now, remember Joey has not eaten anything in two days. He is drinking juice for me, but I've beenhaving a hard time reintroducing solids, so I haven't pushed it. I provided some crackers and some goldfish, but no go. This afternoon, however, Andy was hungry and let me know it; and JOey joined in the chorus. What do they want?

Cookies.

I was making some for Allan's work (they are having a party or something), so it was known that chocolate-chip delights were in the house. However, since they both have been down-in-the-mouth, I wasn't too worried about it. Silly me.

Jargon

"What do you need, Andy?"
"awatirnsursrecth."
"Take your thumb out of your mouth, and speak to me sweetie."
"AAAAAAAAA!AWATIRNSURSRECTH!"
"You want something?" "AAAAAAAA!" "What do you want, honey?"
"AWATIRNSURSRECTH!!!!"
"You want a tyrannosaurus rex?"
"Yeth! T-REX!"
"It's in your hand, sweetheart."
"NOOOOOOOOO! T-rex. T-RECTH!"
"You want to watch your T-rex show?"
"YeeeeeeEEEEEEEEEEEEEETH!"
"Sure, we can watch that."

Andy is feeling better. Joey is not, but he's not waxing. I'm feeling like crap, but not waxing yet. Trying to keep a little guy who is feeling as well as he's felt in a week occupied, while you and the other child feel like you've been repeatedly run ver by a Mack truck (or was it a Peterbilt?) can be quite the adventure. I hate to have him watch TV and play with puzzles and whatever all day, when it is gorgoues and he could use the sunshine, but I have to have two eyes on Joey, eve while he's sleeping. Yesterday, he was running both ends, even in his sleep. It might hav been accomplished better if I was feelign OK, and could hang out half-in and half-out of the house, but the less I move, the better. Even typing is exhausting.

The little sample above is actually pretty clear speech for my little Andy. I also know he's a dinosaur freak, and his favorite show, so deciphering the wails wasn't too too difficult. He also has a lot of practice saying these words. Sometimes it brings me to tears trying to figure out what he wants or needs, sifting through the sounds like Sherlock Holmes untangling a code. I'll be glad when we come through the summer and he's had a few onths of speech therapy under his belt. It has to be frustrating for him, poor little boy.

More Waxing

Oh joy. Now they are both waxing. Lovely.

If I don't write for a bit... wish me luck. :P

Waxing

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.

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.

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.

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.

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!

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.

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.

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?

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?

Battles

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."