The Money Wars

Another article for your consideration: Who Pays for Special Ed?

Don't forget to peruse the comments. Unless you have high blood pressure, in which case I suggest you avoid them.

My thoughts: hurrah for this family, getting the services that is their child's right. No, let me say that again. They are his RIGHT. Just as my lovely little Andy has a right to a free, appropriate public education, so does my Joey. And so does Luke. Until people understand that letting a child rot is NOT appropriate in ANY circumstance, our entire society suffers. Until people who do not have special needs kids really understand what "special needs" means, and what education is about, there will be ignorant idiots who declare that paying for children such as Luke and Joey are a waste of money. And those ignorant idiots will continue to put up my blood pressure.

Charms

I got a call from Joey's new summer teacher today. I was pleased to find her proactive enough to call and want to talk about Joey. I had made a powerpoint to use at his IEP meeting, and she had a copy of that, but wanted to be sure there was nothing else she should know. I mentioned a few things, like the ASL and that if he's having trouble, I need to know, and I was happy to answer questions or help. She seems like a very nice lady. She's training to be the future autism teacher in the lower elementary.

I joined a gym. Partly because for the price of preschool, I get the opportunity to hae 2 hours of childcare twice per day. That's four hours, whenever i want (and can use it). They also have a nice kid's pool with sprinklers and stuff. And Mom is buying it for me, because she's a cool Grandma like that. It's been a big hit. Joey and Andy have been having a ball while I get some exercise in, and then splashing the pool together. Since I go in the morning, and they have lots of adults to help with the kids, the kid room has kind of "assigned" a staff member to stick with and shadow Joey, and that has worked out beautifully- and wthout me really requesting it (I just warned them that he is autistic.) He's been loving it there. But I had to tel them that he was going back to school, and they at least acted very sad.

That is one of Joey's great strengths- he charms the people who work with him. As my Mom always says, "Joey loves the world and the world loves Joey!" I have rarely met children who exude that whole outlook the way Joey does. Joey loves living, being with people, doing and being and laughing. Everyone is his friend, and it is hard to prove otherwise. I know that eventually this may be a problem, but right now, it is a whole way of being that makes people want to help him, want to know him, want to listen to what he has to say and share and be. I will be very, very sad when he discovers he can't go through life that way. He should be able to, it should be the way the world is... but it isn't.

People remember Joey. They ask abotu Joey. They want to know Joey and see Joey and be with Joey. I've seen him charm the governor of Virginia. I'm seen him charm his teachers, his therapists, even the grumpy Sunday school teacher. He has charmed the entire Saturday church service. I think it must be because people do wish the world was like this. It is so much more pleasant when the world is full of friendly faces.

Happy July Fourth. Part 2

It is Fourth of July- and that means FIREWORKS! My boys love to watch fireworks, and talk abotu fireworks- but not listen to fireworks. Whistles and pops are not their friends. Joey spent mostof teh display with his fingers on his ears. Andy started with fingers, then tried jamming green cherry tomatoes in them, and finally hid under Grandma's chair. But would he go inside or sit on Mom's lap? NosireeBob, he wanted to see his fireworks!



Although Andy is considered "NT"- he is not autistic- he does have sensory integration dysfunction. This is not considered a disabling condition, but it seems to me that many of the "problems" we see in Joey we also see in Andy, because the cause is a problem with sensory issues. So though I don't have two autistic children, it sure can sometimes look like I do. When both kids are telling me "too loud, Mommy!" and the NT one is the one under the chair... well, it makes for an interesting Fourth of July.

Happy July Fourth

Just some thoughts on freedom...

I am free to take my autistic child into public. I can teach him hands-on how to deal with social situations, different lighting, and public spaces.

I am free to hug my boys tight. And smooch them. And poke their tummies. And tell them I love them.

I am free to get my children medical treatment wherever I want. I might have to pay for it, but I am free to do it.

I am free to drink a beer in front of my kids in my own back yard.

I am free to feed my kids healthy food and clean water.

I am free to speak and educate people who come up to me and complain about my child's behavior. I am free to discuss autism. I am free to discuss sesnory integration disorder. I am free to tell them to shut up and leave me alone.

I am free to take my children to Church. I can even go twice a week and let Joey listen to the music on Saturdays. I am free choose the church, temple, spiritual circle, or other religion and religious area or group in which my child will be raised to understand God. Or no religion at all, if I so wish. I am even free to visit religious structures and groups other than the one I belong to.

I am free to blog about my children, my life, autism, sensory integration disorder, or anything else that is on my mind.

I am free to buy milk, or anything else I need, on Sunday.

I am free to telephone my friends, from my own livingroom.

I am free to spend evenings soaking in a bathtub with lots of bubbles and a glass of wine, and any book I want to read.

I am free to drive my kids to therapy, the store, the toy store, the farm, the mountains, the beach, or anywhere else I want.

I am free to refuse to allow a gun in my home.

I am free to walk across the street and talk to my neighbors, and let my kids play with their kids, no matter who they are.

I am free to kiss my husband. Whenever I feel like it.

I am free to wear my hair any way I like, and color it bright pink if I so desire.

I am free to write emails to my representatives in government and educate them about autism and special education.

I am free to wear comfy t-shirts and jeans.

I am free to let the dishes sit in the sink, let the grass go to seed, or let the laundry pile up on the floor. I am also free to clean the dishes, cut my own grass, and fold my laundry, even if it is a day or two later than planned.

I am free to teach my kids song lyrics such as For What It's Worth, To Everything There is a Season (Turn, Turn, Turn), or even England Swings.

I am free to be me.




Not everyone on this planet is so lucky, folks.

Four Second Fury

If you have ever played Four Second Fury, you have a concept of my life. I understand that this is normal for people with small children.

The boys are outside. I have exactly four seconds to blog.

Oops, missed the opportunity. Now they are outside again. Now I have four sec

Back outside. My ac unit is hating me right now. So are the cats. But at least I have four seconds to

Sitting on the couches now. Maybe I can

Yes. Four second fury. How much can YOU type in four seconds?

Without Compare

Allan's family came by yesterday. We took them out to Wakefield, and the berry farm, and had a lovely afternoon of it. Best of all, there were no other little kids around to compare Joey to. This means that everybody just saw a happy, loving, sweet little guy, rather than the focus being on Joey's weaknesses. He was charming, cute, and adorable, as was his brother, and fun was had by all.

They seemed pretty shocked when they asked about school, and discovered he would be in a self-contained classroom. Most folks are shocked to learn this, but it seemed especially odd to them, seeing how delightful life can be with my guys. Joey was having a "good" day on top of it, so we didn't have a lot of tracking or screaming or anything that would showcase Joey's problems. Why put a happy, darling little sweetheart in a self-contained classroom?

Remember, these people are not special ed folks. They have the same ignorance of special ed, how it works, and what it is about as most people seem to have. To them, a self-contained classroom is a place where kids who are very severely disabled go. Joey is not "very severely disabled." And yes, if he had an aide, he's probably be OK in a regular classroom- but our school would rather be sued than hire a 1:1 aide. The teacher is good. So there you go.

WE went with the teacher angle. Its the easiest to explain to folks who have no clue. People tend to understand "low student" teacher ratio with excellent teacher."

A Word To Students

OK, I've been reading some rounds of blogs with mostly complaints about people who do things that sound really, really stupid when you write them out in list-form on a blog. I teach college-level courses. I shall take a break from my usual autism topic to just say; here's some tips on how to really rankle a professor...

How to Really Get Your Professor In A Bad Mood:

1. Don't show up or complete a midterm. Show up afterwards or better yet, email, saying "Oops, I forgot to take the midterm. Will this affect my grade?" Yes. Yes it will.
2. Write a long, whiney email about how much work the class is. Explain that you are working a full-time job, raising kids, and trying to do a full courseload. You'll get bonus grumpiness if the prof is an adjunct, since it is likely that they are doing the euqivalent of all this while trying to hold down three or four jobs to your one- and being paid less.
3. Ask lots and lots of questions that are clearly answered in the syllabus. For example, "When is the midterm due?" or "do we have to participate in discussions this week?" or a perennial favorite, "What chapter are we on?"
4. Write rambling, tangential posts on discussion forums in poor English, then complain when you are asked to clarify the post. Ditto for in-classroom comments. Do this a lot for lots of extra grumpiness. For extra, extra bonus, complain to the Dean about your grade.
5. MIs-spell important terms and/or names in non-timed assignments. Complain when you don't get a perfect score. More extra bonus points for complaining to the Dean.
6. "Forget" to complete the first three weeks' worth of assignments. Complain loudly about how the professor wasted your money when they advise that you withdraw from the course. More bonus points for contacting the Dean.
7. Post unprofessional, "humorous" posts on discussion forums, or make inappropriate, off-topic jokes in class. Complain when the professor points out that the post or joke is inappropriate. Complain more when the professor deletes such posts or stops calling on you. LOTS of bonus points for whining to the Dean. Even the Dean will give you bonus grumpiness.
8. Turn in a paper that is 13 pages when the assignment was 20-25 pages. Or don't cite sources or examples when the directions clearly state you need to do so. Complain that you need the course to graduate- and you need at least a C. Guess what happens if you protest to the Dean (or Department Chair)...
9. Stop coming to class. Comlain about failing same class when you return the next semester. Bonus points for having sent emails about how you needed a certain grade in the same class to transfer/get off academic probation/graduate.
10. Sign up for class with long waiting list. Drop class. Sign up for it again. Drop it. Sign up for it again. Withdraw from it. Sign up for it again. Drop it again. Sign up for it again. Fail it...
11. Complain about other students getting accomodations... when you have no disabilities. Lots and lots of extra ire for complaining to the Dean about "favoritism." More bonus grumpiness for going onto public websites like "ratemyprofessors.com" and making nasty comments about the professor being an unfair grader (and yes, there are ways to know who send those comments, people... especially if you are registered.)

Students who flunk classes because they couldn't be bothered to do the work or follow directions always makes me grumpy. Don't let it happen to you.

Inconceivable!

We've been spending a lot of time watching Signing Time around here. Rachel Coleman, whose children are the inspiration for creating the series, also wrote several interesting songs about having disabled children and thoughts about those children, which are often played (and signed) at the ends of the episodes. In one of the songs, Shine, she talks about lists of things she was told her daughter Lucy would never do- and now does. Over the three years we have had a diagnosis for Joey, we have been told by a variety of people that there are things Joey "will never do" because of autism. Mostly, these lists do more to reveal the ignorance other people have of disability generally and autism specifically, than provide any useful advice or information.

Joey may never be able to feel empathy, or recognize emotion. He may never recognize people. He may never generalize skills. He may never talk. He may never read. He may never write. He may never be able to handle change. He may never be toilet trained. He may never point, or have joint attention. He may never make friends. He may never be able to maintain relationships. He may never show emotion. He may never react appropriately to situations or emotions. He may never jump. He may never be able to focus on a task. He may never be able to self-regulate.

All of these things he either does, or is well on his way to mastering.

Sure, there are lots of "nevers" yet to be tested. He may never drive. He may never have a girlfriend. He may never get a job, or keep a job. He may never have the opportunity to go to college. He may never live independently or leave home.

Yet I have the sneaking suspicion that my response should be, as per The Princess Bride: "You keep using that word. I do not think it means what you think it means..."

Swimming in the water

We ran up to my aunt and uncle's today. They have a pool, and Joey loves pools. A big, in-ground pool. Joey was excited the whole way up. We told him he was goign to see his cousins and go swimming, and we had a joyous chorus of "Joey's swimming in the water!" all the way there. It was only an hour and half.

This is one of those days when the idea of Joey being disabled simply isn't in the equation. He simply is who he is. Yes, we had a good bit of tracking today, and that meant he didn't engage with his cousins so much, but he did enjoy seeing them. He loved being in the pool. Andy certainly had a blast hanging out with the "big boys" (the boys are actually my cousin's kids, and they are some 4 years older than Joey). The thing was, even if Joey couldn't focus on a game or fully engage with the other guys, he was having fun. He was trackign because he got worn out from all the excitement, but that is just his way. We only had one screaming fit, and that was because Joey could have stayed in the pool for the rest of life and been happy, but he was exhausted and cold and really needed to get out and get dressed. Like any little kid, he anted to keep doign what was pleasurable, despite falling asleep on his feet.

It didn't matter that he couldn't talk like other 5-year-olds. It didn't matter that he couldn't really socialize like other kids. This was his family, and he could be who he was, just as he was, and that was fine. I wish all my family was like that. Ah, wishes again...

Sometimes you pick your battles. We'll just keep taking him around to the ones who love him, and not inflict the others upon him whenever we can avoid it. He has better things to do. Life is short.

Life is good.

Things that remind you that Life is Good:

Two faces smeared with cupcake frosting- preferably bright, neon colors.
That joyous victory squeal as you pull the vinyl from the shed: "Yes, Mommy! POOL PARTY!!!"
A boy curled up in the crook of your knees.
A good-morning kiss that wakes you up- that you didn't even see coming.
Giggles from down the hall after bedtime stories are all read.
Pretending to make soda in the bath tub.
Getting in the car to the chorus of "An-muls!" knowing you're going to oblige with a trip to the petting zoo.
Tickle fights.

"I...want...soda...please!"
That first trip to see Dinosaurs at the Smithsonian.
A boy with a lollipop in each fist.
Teaching boys to play skeeball.
A big, chocolatey kiss... and you don't know where he got the chocolate.
Waking up to two boys on your bed... playing quietly.
The cheer when those boys discover your eye is open.
Watching a boy chase bumblebees in the clover- all afternoon.

Dreams of Joey and Andy

It is amazing that people expect parents to be perfect. Infallible. Paragons of virtue, wisdom, and grace.

Parents are not people. They are... moms and dads.

Joey did not have a name or word for me until he was well into being three years old. Until then, I simply was. And then, I was mom. This is perfectly fine. Joey is only five years old. But it gets old to see adults who still don't get it. You don't stop being a person when you become a parent. In some ways, you become more of one, because you gain so many new social and cultural roles.

The day you realize and understand your parents are real people- with thoughts, dreams, feelings, and and life completely seperate from your own (which existed before you!)- you stop being a child. You become an adult, with new roles.

I have a hard time describing what it is like to be a parent to people who have no children. I was the first of my circle to have children, and most of my friends, upon discovering their own pregnancies, called and asked, "What is it like to be a mom?" These same friends who had been giving me parenting advice for years suddenly looked parenthood in the face and realized they were in alien territory. People who advised me on how to get Joey or Andy to eat, stop wandering about a room during a library reading, go to bed, brush their teeth, or go to the bathroom suddenly got the epiphany that they had no idea what they were talking about. Oops.

All of these people have dreams for their children. Ideas of how to raise their children. Beliefs of how children should behave, what is socially appropriate for them, what skills they need to survive, and how those skills should be taught, practiced, and communicated. That is what parents do.

I love the essay Welcome to Holland. It is a glimpse at what it feels like to have life not go the way you thought it should, the way you were taught it would, the way things are planned, dreamed, hoped for. The best part of the essay is at the end- when you appreciate the wonders of life as it is. And yet the essay acknowledges the pain. It is not swept away in some righteous, virtuous, Stoic ideal of saying "so it is." When life takes unexpected turns, you are effected- as is everyone around you. When Joey was born, life changed. When the words "He is either profoundly deaf, profoundly autistic, or both" fell from the lips of the SLP at Mary Wash, my life was changed. My life. Why do I not have the right to mourn for that life?

My life changed. Joey's life changed. My mother's life changed. Andy's life changed. Allan's life changed. In a single moment, we entered a new world. The plane landed.

Before the plane landed, life looked like everyone else's life- we didn't know we were already on course for somewhere other than Italy. No one on that plane did. We were all busy chatting in Italian. So the shock of the change is when the plane lands.

Personally, I have never really been sad about the "might have been" for Joey. He didn't really change; I did. He is still Joey, just Joey with a lot more help than I would have otherwise known to get for him. I do wish his challenges were not so great. I wish people who are supposed to be helping him would actually do so. I don't remember what dreams I had for Joey before we realized autism was a part of our lives. I hope they were what they are now- a drive to help him develop his talents, enjoy his life, and be happy. Right now, i'm not sure entirely what that will entail, because I have to listen close and watch close to see what he wants for himself, and to see what develops. Same for Andy. Actually, what they want right now is to have cookies for dinner and chocolate on immediate stand-by, 24 hours a day. It is my job to guide them to more appropriate joys and talents. In order to do that, I have to have some idea what those are.

I have been sad for the "where I was going." My life. Remember me? I'm still a human being. I would very much have liked to spend my life with my boys lounging at the Ganges View with lemon Mirindas all-round, pondering the mysteries of ancient India while enjoying the laughter of little boys. But folks, the liklihood of me landing the career path that would have allowed this is now exactly Nil. That is the reality. I have to change course, think up new dreams. But I still think about that one. I'll get these boys to India, but I doubt they'll be very young when I do so. Or that it will happen very often. Economics remains a major factor in reality.

And while I'm here in an insomniac ramble, I want to go back pick up the thread of the word "understand." Knowing something is very different from understanding it. Most kids know that their parents are people. They don't understand that parents are people.

Joey and Andy are learning ASL. We often make a game of quizzing each other on the signs, and they are both pretty good at it. They can tell me the meaning of almost every sign I throw at them (which is admittedly limited to the signs we have covered on our DVDs). Joey's favorite sign is fox. Andy's favorite sign is candy.

Andy knows the sign for candy. He thinks its funny to twist his finger on his cheek It tickles. If I say, "show me 'candy'!" he will make the sign. When I show him teh sign he pipes up, "candy!"

But today he understood the sign. Joey came out of therapy with a lollipop. Andy wanted one. So I asked him to sign what he wanted. He looked at me lie i was a crazy person. I asked him if he wanted candy, and he automatically said yes... and then I held up a lollipop, unwrapped it, held it out to him, and signed and said, "candy." You could see the little lights switch on. He popped it in his mouth. He squealed, pulled it out, signed and squealed "Candy!" and got excited. He got it. He understood. He knew the sign and what it meant before- but now, with the candy in his mouth, he understood. Candy!

Surprise problem

This was a morning I was so glad we have the new locks.

White Car (our van) is in the garage being fixed, so we are temporariy in our old red Jeep to get around. Usually Joey is begging to "go in the Red Car" because he loves red, so I didn't worry too much. We also have Green Car, which is the car Allan takes to work.

Yesterday we played a little bit of musical cars because of the drum lesson timing, which is also on a new day (see what is coming yet?) So Joey and I ended up coming home in Green Car.

This morning, I was awakened by a wail... "Green Car gone!!!!" Rememebr, Green Car is the car Allan uses to go to work- and he went to work this morning. So we talked about Daddy going to work, but that made it worse- now he started to wail, "Daddy's gone! Daddy? Where are you?"

Andy was still sleeping, so I got Joey into his clothes, and then went to go put on clothes myself. Andy woke up, so I had to stop and put him together, too.

We came downstairs to find Joey with his shoes on (hey! Look! He put his shoes on all by himself!) pulling on the back door (the lock we just changed) sniffing about "Green Car! I want my Green Car!"

Poor little guy. Start of summer has his schedule all topsy-turvey. So I'm hugging him lots this morning.

Sequencing

Joey is learning sequencing. He has a difficult time with sequencing as a general skill. The idea of something happening first, then the next thing happening, and then there being a result or conclusion is something he finds either uninteresting or challenging. Unless...

I had to go to the big IEP for Kindergarten a bit ago. Grandma watched the boys. Joey has been having a lot of trouble with me leaving the house without him, so this was a Big Deal for Grandma to have to watch them. There was nothing else for it. Off I went, and home I came.

Joey spent the couple of hours plotting. When I left, he screamed his head off for 45 minutes. Grandma explained to Joey that I had gone to school to talk with his teacher about kindergarten, and that I would be home soon. The screaming gave way to the plotting. There was a black truck parked across the street; he could see it through his favorite window.

"We get in the black car. We go to school and see Miss Kaila and Mommy."

There we go. Three-step sequencing.

Joey can escape from the house if the key is in reach, and has done it. This requires going to the door, turning the key, then walking out of the house. Three-step sequencing.

But he cannot tell you what he did yesterday, or what will happen tomorrow. Taking three related pictures and put them in order? Forget it. He can pick up random things in a story, but cannot retell it.

He can recite the entire Silly Pizza Song and gets upset if you get the foods out of order, but has trouble completing simple "obstacle courses" for his OT (though he is improving!)

How does one communicate the concept of first- second- third?

Sequencing may not appear to be a "critical life skill." After all, who cares if you know the order of a story, the teacher can read it to you? But sequencing is about learning conclusions and consequences. I get hungry. I eat food. I am not hungry anymore (or, I have energy to go play.) Doesn't seem like a big deal unless the sequencing is a problem, and then connecting eating to staying alive and having energy gets missed. Or how about, I want something across the road, I run out into the road, I get hit by a car?

At our next IEP meeting, I am again going to have goals flagged as "critical life skills." It makes it easier to get ESY if flagged goals are not mastered, and it lets the school folks know what skills I find important. The sequencing goal is definitely getting flagged.

Just a little update

Busy busy busy here... Andy is potty training. I am running around after him with the paper towels today- we're wearing our underwear!

And they are spending the day watching Signing Time, so we're practicing our signs. Joey only takes a couple of viewings before he has it, or at least the idea of it. Our OT was excited because signing requires bilateral coordination and some motor planning- so it takes him a little longer to be able to do the sing, but he understands it almost right away.

Fun fun fun!

Theory of Mind: What is this rot?

The topic of "theory of mind' has been popping up in all sorts of odd places for me- particularly the idea that autistic people don't have it. Either I don't get what "theory of mind" is, or the idea that autistics don't have it is a lot of rot.

In a basic simplification, I understood that the "theory of mind" means that one person can understand that another person has a mind. It is being used as a shorthand for the ability to pick up and react to other people's emotions, because you understand that they HAVE emotions, thoughts, feelings, beliefs, etc., and that these emotions, thoughts, etc. might be different from yours.

Setting aside that I know a lot of non-autistic people who have a lot of trouble with the second part of that, I haven't yet met an autistic person who didn't have these abilities. They might not be able to react appropriately to other other people, but that seems to be more a problem of processing and accessing proper response. Kind of like Joey having a hard time accessing words spontaneously, and so he has a great deal of trouble with communication and expressive language. He copes with this by scripting, or quoting like Mrs. Who. Sometimes he accesses something other than what was intended, resulting in words that make no sense; or he can access nothing at all, resulting in either silence or frustrated squealing (or other noise).

In other words, Joey seems to have no trouble understanding that other people are, in fact, people. He is very sensitive to emotional states- especially mine. He certainly understands that other people do not feel and think the same way he does. And he's only 5, and I've had evidence of this for a while.

People who are not autistic seem to come up with the odd ideas when they just can't get the fact that there are people in the world who cannot communicate orally- or even verbally. They seem to have their own problems with "theory of mind" in that they can't understand that there are other ways to communicate. Joey's private speech therapist has been very apologetic since she started Joey on ASL, because it became immediately apparent that Joey understood a lot more of what was being said- and what he wanted to say- than she had been giving him credit for. With teh visual cues, Joey can circumvent some of the auditory processing and instead use his visual processing- and so can better understand what is expected of him and what is being said to him. He can also access his words better and faster.

Before Joey had use of words, even signs, we knew what he wanted and needed much of the time. We could certainly tell if he was happy or unhappy, if he liked anothe person or not, that sort of thing. We had communication with him, and he understood to communicate with us- just not in the "usual" ways.

Theory of Mind seems to be just another way of trying to depict autistic people as something less than human. Of taking away their sense of humanity by taking away their sense of community. It is easier to make an object of a person you believe is making an object of you.

Joey gets the idea of people. When Andy hurts himself, he's quick with that hug and kiss- always was. When Mom is nervous abotu an IEP meeting, he gets upset, too, and lots more cuddly (and clingy). When we're all happy, he's all smiles. He wants to make people around him feel happy. When he laughs inappropriately, he's still reacting, and even usually seems to know that laughter isn't what he intended. He's got the idea that other people have minds.

I have no idea yet if he knows those minds aren't like his.

Parking

On the advice of our doc, we got a disabled parking placard. This is a little peice of plastic that looks like a do-not-disturb doorknob sign, and it allows us to park in disability parking spots when we have Joey with us. I've been putting off getting it. Joey doesn't have trouble with actual mechanics of walking- at least, not enough to prevent him from crossing a parking lot. With the increase in bolting, the doctor thought we should go ahead and get one, though, because some places around here only have off-street parking for disabled persons. Getting Joey in and out of a car in a lot, instead of on the street, is far, far safer, especially if the place is unknown or not well-known.

We used it for the first time yesterday. We took the bairns to the mountains. It's a nice ride, and Skyline Drive is so pretty. Joey was a little overwhelmed by the views, but Andy liked it, especially if a bird flew out over the valley. We stopped for lunch, and the lot was full- except the disabled spots. We added up our situation: strange place with busy parking lot, lots of people, no other spots available anyway, spot available almost at door. We whipped out our new placard and parked.


It was amazing.

Normally in such a situation, getting out of the car would have been a carefully orchestrated set of events intended to keep Joey tethered to one of us while the other wrestled Andy out of his harness. We then do a careful hand-in-hand dance across the tarmac hoping that wriggling fingers don't break free and suddenly have a boy in front of a moving vehicle, or worse, have a child melt down.

Not this time. We pulled into the spot, and herded the boys almost directly onto the sidewalk, away from cars. Then we went smoothly into the building. Coming out was even better. Out the door and into the car. No tarmac-crossing necessary. No danger of stepping in front of cars. No worries about getting halfway to the car and losing a child to wriggling or melting. No problemo.

Today I took them to Maymont. I used the magic of disabled parking again. The disabled spots are right in front of a little path enclosed by shrubbery right down to the door. No steps to trip on. No crossing in front of traffic. I can't BELIEVE how much safer this is. I'm just flabbergasted.

I won't need it in common places like the grocery store, because I park next to the carts, since Joey prefers to ride safely enclosed in a cart. But in unfamiliar lots... what a lifesaver!

IEP Aftershock

The meeting went pretty smoothly. The school OT kept her mouth shut, but also offered no actual goals. She managed to put her name on something so she can be put down as a consult, but that's probably just because she'll be in teh classroom anyway; I suspect she has to clock her time or something, so the more "consult" she has, the less actual work she has to do. But perhaps I am being ungenerous.

Anyway, we got some goals, mostly social interaction and language stuff, and we've got the good teacher. I'm going to chat with my private OT, who went to the meeting, abotu the OT situation before I sign this thing. I'm not crazy abotu having the school OT messing with my child, but I'm also worried about having direct OT off the books, and maybe he needs some goals that got swept under the rug?

The new administrator is a no-nonsense, get it done kind of lady. This made the meeting go at lightning speed. Another reason to not sign anything- what didn't get discussed, because we were distracted by pre-drafted goals and the march to signatures? We're in no hurry. The teacher I already know is the best our system has, and we seem to communicate OK. The new SLP seemed OK, and friendly enough. So this might be OK. That would be nice. We'll see.

The new team was very interested in a powerpoint I put together about Joey. It's a little too detailed to be posting on a public blog, but mostly I used Kristina's (Autism Vox) suggestions to put it together, so that we could communicate how we view Joey, the role of the school in his education, and highlight his strengths and abilities instead of the deficits- since most of these meetings dwell on goals for thigns he isn't doing so great with. The preschool staff would see my computer and roll their eyes. These new people wanted printouts to distribute to the staff who would be working with Joey- all of it. There's an interesting change in pace.

One thing that kind of bugs me is the whole system made manifest by the meeting was clearly geared to absent parents. It was like a great machine, and you either said yes or no. I wonder how much of the smoothness is because someone has told people to back off, or if they've just figured out ways to keep me at bay, so I have to go home an dthink about what actually happened and whether it is worth hiring a lawyer and checking everything top to bottom. Or maybe they know I'm likely going to do that anyway, and just aren't going to put out more energy than needful. Or are these new people more efficient, being used to having lots of kids show up at kindergarten with no intervention and disinterested (or overbooked) parents? Or did someone put a fire under someone's butt and tell these folks to start at least appearing to obey the law and quit making fusses? We've had so much trouble, I am still inclined to be suspicious. I want to know what is going on for there to be such a dramatic (apparent) attitude shift. But for now, I'm jus going to go over the IEP with the proverbial fine-tooth comb and start from there.

Shame we dont all live closer so we can get together for an IEP party and pull apart each other's IEPs and ask questions and stuff. :P

One of Our Fears

We live in fear of this all the time.

As we prepare for our IEP, we also prepare to answer for that most heinous of suggestions: that Joey does not need service and support because he is "high functioning."

Yes, Joey likes to interact with peers. He hasn't a clue how to do it, but he really, really wants to. He doesn't have the language to carry a conversation, or to respond to another child's request within play (he can answer "Do you want to play?" but when asked "Want to play superheros? Want to be Superman?" we are definitely out of Joey's element.) Joey can count, he can name colors, he can write his name and read a few words. But can he ask a question? Can he communicate his needs? Can he engage in social conversation? Can he, in short, function?

And until he can, why call him "high functioning"?

Presents

I got the presents: beautiful faceclothes and shower gels all around. It took me half an hour to pick out the clothes. Some of the other shoppers were laughing at me rummaging through the towels and touching every single cloth- but the point was to find the ones that were thick and lovely. No one needs another cheapo yucky facecloth. I gave out massagers last year, so this should work fine. A little spa treatment over summer vacation.

I was even nice and got one for the school OT.

On the upcoming IEP meeting

This morning I plan to go shopping for end-of-year presents. I'm not sure what I'm going to get. Usually I have something in mind- but this year, I'm a little aimless. It isn't like these people have been wonderfully helpful, friendly, or even polite. They've done little for Joey- he's doing The Very Hungry Caterpillar for the third year running, and is bored to tears, and they wonder why he's being uncompliant and argumentative. When I ask questions, the first response has been "We're professionals; why are you asking questions?" I feel like Harry Potter trying to talk to Aunt Petunia.

I'm not ask stressed as usual about the Friday meeting. Maybe I'll start freaking out tomorrow. There's really no point. I have the OT coming with me, and the kindergarden teacher has said she will also come- I think it is silly that the next teacher wouldn't be automatically included at this meeting, since she is the one who needs to understand the IEP. But I got that fixed, she's coming. I'll do what I can. And if there needs to be more, I'll call another IEP. I may hire a legal advocate for next year, but we'll see how these people deal with it. I'm kind of ooking forward to having a mostly new team- though I get to keep the most problematic member of my current team. Hooray! That's why the OT is coming with me. I'm not the only one unhappy with Joey's OT goals.

Tonight, I'll comb through the reports we have and put together things that need to be addressed. And we shall see what they feel like addressing.