Twas The Night Before Christmas (with Autism)

I saw this online, and just wanted to share it. :)

‘Twas the Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent.."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions..

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you.

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.

Christmas Quote

Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas. --Calvin Coolidge

Today is Dh's birthday. Ds and I braved a snow storm to get his gifts. We also got a cake to surprise him.

Ds was restrained at school twice this week, and the school never even bothered to inform me.

DS had another meltdown yesterday at school. The school never even bother to try to call me. I don't even have a missed call on my phone.

"I had a terrible education. I attended a school for emotionally disturbed teachers." --Woody Allen

Ds had a nuclear meltdown at school today. I had to go get him.

“To get through the hardest journey we need take only one step at a time, but we must keep on stepping.” -Chinese Proverb

MIL stood up today, in PT! Only for a second, three times! The first time she's been on her feet in months!! WOOHOO!!

Christmas Blues

I'm kind of struggling through the Christmas blues at this point.

I know, it doesn't make any sense. I have every reason to be absolutely delighted and thankful this year. My MIL is getting better, and we may even be able to bring her home for a little while on Christmas. That is just awesome news! And she's working hard to be able to stand, which would make all this a little easier to carry out. Even if she can't get to that point, we can still do it. We'll just need professional assistance to accomplish it. That's fine. And the nursing home will help us arrange it.

So why so blue? I guess it all just stirred up some old memories. I had a brother pass away just after Christmas when I was a child. Christmas was the last time I saw him. Christmas was never really the same after that, as you can imagine. So I've always had some struggle with the holiday. And his birthday is coming up soon. so that doesn't help much either.

On top of all that, my mother passed away just before Christmas. In fact, she was buried on that brother's birthday. (Yes, the timing certainly seemed like more than just a coincidence.) My mom had cancer, and was trying to hang on to make it to the holiday, but it wasn't to be.

I suppose all this hospital stuff, with the scary times, and the cold hard facts from the hospital staff, it really brought all those painful memories back, for me. Even though my MIL has pulled through, and is doing much better now, the memories still cling. Some of it was rather deja vu. My mother was unable to speak, and neither was my MIL. The family gathered in the intensive care waiting room, the blatent disregard for the hospital rules, and the hospital turning a blind eye to our rulebreaking. Becoming so familiar with the hospital staff, that you know them by name, and get mistaken for an employee. Being able to come and go as you please. The stress. The heartache. Hearing the cold facts, and knowing their truths, but experiencing denial anyway. Phone calls in the middle of the night. Siblings coming home. Sleepless nights, uneaten meals, afraid to hope or to plan. Prayers and bargaining. The Kubler-Ross stages dancing in my head instead of sugar plums. Knowing what can happen to a family structure, and to holiday traditions, when the matriarch is gone.

The experience with my MIL was a close call. Thank God we still have her with us, and we are thankful for every minute.

It's all been a blur between the past and present and future in my head and my heart. I feel the pain of the past, the fragility of the present, and the fear of the future.

I know I have to put all this aside and celebrate the holiday season. I have to throw myself into cookie baking and shopping and wrapping, and decorating the tree. Somehow it doesn't feel like Christmas though. It feels like past. And I have to ignore that. I will ignore it. It's just hard to get into it. I hope this year, I will start out by going through the motions, and then pick up the actual good feelings and anticipation. One can hope.

It's supposed to snow for the next few days. Maybe that will help lift some Christmas spirits.

To feel keenly the poetry of a morning's roses, one has to have just escaped from the claws of this vulture which we call sickness. -H.Amiel

Another 2" of snow yesterday

We're trying to see if we can bring MIL home for a while on Christmas!

We got about 5 inches of snow here today!

My MIL is OUT of the HOSPITAL!!!

One Step Closer To Home

We toured a nursing home today. It was a really nice place. They told us the hospital is planning on moving MIL either Wednesday or Thursday. (And I figured Wednesday because who moves into a new facility on Thanksgiving??)

Definately something to be thankful for this year!

Real Progress!

I went to see MIL last night. Wow, what a difference! She was stronger, her voice was much better (though still quite hoarse), and she was EATING! I couldn't believe it. Since all this began, she hasn't really eaten more than about a tablespoon full of food for a meal. A half a teaspoon of this, a half a teaspoon of that, and she was pretty much full. We'd have to push to get her to eat any more than that. But not the past couple days.

I was shocked to hear Thursday that she ate a small bowl of spaghetti when dh was there. He had been really pushing her to eat more, but even this was far beyond his expectations. Then, last night, when I got there to visit, the nurse called us aside and told us that she had been eating very well. She said she had eaten half her main course at breakfast, all of the side dish. a full drink, and a banana! Woohoo! A Real meal!

They're talking about removing the feeding tube and moving her to a nursing home NEXT WEEK! YES!

Girls Just Wanna Have Fun

http://ping.fm/p/77wKw - I did it! I got my nails done!

Gee, that was fun! I should have done this a long time ago.

I took ds with me. He sat by himself for a while, doing homework, then he
got bored and came to socialize. He found the activities rather
fascinating, so I involved him. The artist had done up a few samples of
puzzle piece nails, to see which I liked best. Instead, I let ds pick. He
also got to pick the colors, and had a few other chances for artistic input.
He seemed to get a big kick out of the fact that his opinion was taken so
seriously that I would paint it on myself. I was glad he came along. He
could have gone with Dad, but we've been trying to eliminate hospital time,
so things can be more positive for ds. He's really struggling with spending
so much time there, and acting up in school because of it. Going with Mom
to the beauty shop wasn't the same as staying home, but it sure beats a
hospital lobby. We had a good time. He liked helping me choose designs.

He did a good job! We both liked the same designs, but our first choice
wouldn't have worked well. I could have gotten the Autism Awareness ribbon
painted on, but for that I would have needed to go to a longer nail length,
to be able to use a design that big, and I didn't want to go that long. I
do still have to type for a living, so best to go a bit more conservative.
So we went with our 2nd choice, a stripe of puzzle pieces. Ds picked the
colors of the puzzle pieces, too.

Before I went into the shop, I made sure I curled my hair (my hairstylist
works there too, and I didn't want her to think I didn't take care of her
handiwork), and I wore makeup. I almost went further and wore jewelry,
necklaces and earrings, but thought better of it. I didn't want to have to
deal with removing it, and damaging the too freshly painted nails. I'm glad
I held off on that one. Tomorrow will be soon enough for that.

I feared I may have done a poor job getting 'gussied up' this morning,
because when I first arrived at work, with curled hair and makeup (a rare
occurrence), nobody seemed to notice.at first. (I didn't take into account
that I arrived later in the morning, and they had all been there since
before sunrise.) But then my co-worker, the one that suggested that I go to
that hairstylist to begin with, spoke up and asked me what I had done
differently with my hair, that it looked really nice like that, and went on
to point out the things she really liked about the way I'd styled it. I was
so relieved! I could be seen by the hairstylist without shame, lol.

So I guess I'm all dressed up and no place to go. That's okay. I feel
happy, and taken care of, and peaceful. And I have that Cyndi Lauper song
dancing in my brain. (I do like that song.) I've been calling my nails "Ds
Nails" (insert name in place of ds), and he gets a giggle out of that. So
he feels happy, too. It was a good night.

Oh, and before you think that poor dh got forgotten here, spending the night
in the hospital while I had fun, I did inform him this morning that he's
getting tickets to see a hockey game. His fun time will come! (Ds got
Chucky Cheese, too.) Everyone needs to have a little fun.

I just got my nails done! I had some puzzle pieces painted on my ring fingers. :)

Hospitals and Autism Don't Mix

Through all the medical crisis, poor ds has been dragged to the hospital on a daily basis. We've tried to accomodate his needs as much as humanly possible, but the poor kid has really struggled.

We made sure he had access to a tv, video games, and chances to play and have fun, and visit with kids (cousins and visiting friends). And time to do homework where it is quiet and spacious.

We tried to keep to a routine, and make sure he got up and went to bed at the same times, did homework at the same time, ate at the same times, all that kind of thing. I tried to allow him kid-time, to be free of the restrictions of the hospital environment. He was sheltered from the hospital talk.

But it's just not the same. We all know that. And ds suffered for it. He is frustrated, missing his normal life. (We all are.)

He started having meltdowns in school. And the school has no sympathy for him. We ended up late at the hospital one day, when MIL was not expected to survive the night, and we didn't get to homework. He actually did part of his assignment, but not all. I wrote a note to the school, explaining that we were there late, didn't get to do homework, that MIL is in critical condition, etc. He turned the assignment in one day late. So you know what they did? They still dropped his grade one letter grade for being late. It went from an A to a B, and it was written right on the paper that it was marked down for being turned in late. Which is what they do for any kid who turns in homework late. They have absolutely NO consideration to his circumstances. What a**h*les. No compassion at all. Ds was FURIOUS. (So was I.) And he crumpled up the paper and threw it on the ground. Can't say that I blame him. I felt like doing the same thing.

He had several meltdowns after that. Not surprising. When you're dealing with people who have no compassion to begin with, they aren't going to be supportive of autism either. I received phone calls to come and get him because he climbed under a table. (You know, why the hell can't they just LEAVE HIM ALONE when he does that? He'll come out in a few minutes. Instead they all throw fits, try to force him out, and make the situation worse.) Poor kid.

So we made some changes. He's rarely at the hospital anymore, which means I'm rarely at the hospital too. Dh feels the need to be there all the time, and I can understand and relate to that. But it's just not good for ds.

I had an early day off of work, so I spent time at the hospital while ds went swimming with his daycare. I wasn't able to pick him up until a certain time, so I stayed at the hospital. It gave me some good visiting time, and gave ds time to play. Or so I thought.

Turns out, playing at the daycare was a nightmare. The place just doesn't 'get' autism, and they don't accomodate his needs at all. I'm so sick of this. Ds ended up being bullied by the kids, punished by the adults, and spent all day just miserable. The only thing he did enjoy was the swim time, so at least he got something positive out of it. But I just have lost all hope where daycares are concerned. None listen, none care, none are any good for him. It sucks.

But since we severly restricted ds's hospital time, he has really bounced back. He's happier, fewer meltdowns, and life is much less stressful for all. Since I can't spend as much time at the hospital, I've spent time trying to cook real food for the rest of the family. We're so sick of restaurant and carry out, we could scream. So I made batches of chili and beef stew, and sent some to FIL. It's good to eat real food for a change.

But I'm so tired of the school and the daycares. I hate dealing with these places. They tell you they'll be supportive of your child with autism, but they aren't. They won't listen to anything you tell them. They don't want to learn. They'll try some crap that their own books and advisors suggest, but they won't put any real effort into it. They don't want to have to deal with it. The feeling is mutual. I don't want to deal with them either.

You can tell them your child has sensory issues, and loud noises, touch, and stimulating environments can be disturbing and frustrating to him, but then they get angry because he melts down during a fire alarm. They say they'll provide a one-on-one aide, yet the person is always missing when dh has a meltdown or takes off - she's used like a teacher's aide, instead of a student's aide. And they get mad that he melts down in the gym during a game of dodgeball. Idiots. We tell the daycare that he gets very upset if you punish him unjustly, punish him for something he didn't do, so the next time he is a victim of being bullied, they punish BOTH kids. And don't understand why my son locks himself in the bathroom because of it. Idiots. And the school tells us they are so sorry to hear of all that we're dealing with at the hospital, and if there's anything they can do to help ds with it, and then they dock him a grade for turning in one assignment one day late. A**h*les. I tell the daycare that he has autism and sensory issues, and when ds gets out of a warm swimming pool into a freezing cold locker room, they get ANGRY because he tells them he is too cold to get dressed. I looked at the caregiver and started to explain that he has autism and sensory issues, and the guy cuts me off and yells, "YEAH, I HEARD!"

A**h*le.

Sorry, I'm very frustrated with all of this, my patience and strength are stretched too thin.

I wish I could find a school, or even a single teacher, that can deal with my son with patience and understanding. I wish I could find a daycare that doesn't punish him for his differences.

The funny thing is, ds is pretty easy to deal with at home. We've got things running smoothly here. He's happy and productive and successful in his own environment. And in most any other environment, with the obvious exceptions of school and daycare. Yeah, I know, those are significant exceptions. But what do I do? I've taken him to psychiatrists, psychologists, behavior specialists, and therapists. They all tell me the SAME thing! They all tell me, "They need to provide your son with support. They aren't supporting his needs at all."

But they claim they are. They provide all kinds of supports. (At least the school does.) Of course, they admit that they don't do it like they're supposed to. They don't show him his behavior chart several times a day like they are supposed to. Funny, when they DID, his behavior improved, and when they didn't, his behavior worsened. But they insist that it doesn't really work anyway. Go figure. Oh, and they give him an additional table and a chair. So? He doesn't really need that, and we never asked for that. That was something they believed worked because that's what the school told them to do. We keep asking for patience. They show him NONE. We ask for understanding, they accuse him of being lazy. We ask them for suggestions on how we can help, they tell us to take away his video games. We did that and his behavior went ballistic. Video games are his obsession, his special interest, his perseveration, his lifeline. The therapists all challenged this. They said it was the worst thing we could do, and found the school's reasoning on this to be very misguided and uninformed. We ask the school to not touch ds when he is upset. They respond by dragging him out of the classroom. We ask them to allow him time to regroup, they insist he behave NOW. The daycare asks us for information about how to deal with our son's autism, then doesn't share that information with the other caregivers that work with him.

I suspect that the biggest problem we have is that ds is so high functioning, and often appears to be NT, that everyone expect him to *BE* NT. Isn't that the irony? If he were non-verbal for example, they would start out with the understanding that he's different and is entitled to accomodation. But since he looks NT, and often appears to behave NT, therefore he better act NT or he'll be punished.

I'm so tired of all this. I wish I could just pull him out of school and homeschool him. I can't afford to do this though. Especially now. I wish I could yank him out of daycares. Obviously I can't do that. But none can work with autism. Not one.

It feels hopeless at times. Not living with autism! That's the easy part. It's dealing with the outsiders. The school is hell. The daycare is hell. Home and family are the haven.

I know ds will be fine. He'll get out of this hell of school and daycare, and he'll find his niche. He'll be productive and he'll be happy. Really happy. He's very easy going, as long as you understand him and have patience and let him be himself. He doesn't ask for much really. And if you let go of the idea of treating him like you were treated as a child, he will thrive. Drop your conceptions of "lazy" and "spoiled," and you'll find that my son is incredibly sensitive, generous and tenatious. Let him be "lazy" for ten minutes, and watch him work harder than all the other kids combined for the next two hours. "Spoil" him by treating him with respect, just as much respect as your OWN needs deserve, by letting him do things his own way, and you'll find that when you respect him and his needs, he will also respect you and your needs, and he'll be very happy to work *with* you and not against you. Incredibly easy. But obviously too much to ask of a school. The sad part is, they would be shocked at how simple and easy this is, and how little they would have to do, and how much stress and chaos it would remove from their school.

I'm so frustrated. Not a 'give up' kind of frustrated. Just irritated that there isn't any place out there to help us. No school. No daycare.

No, I guess there is one place - the autism school. The only drawback there is that the school is tiny, and far more restrictive an enviroment than he needs (most restrictive as opposed to least restrictive), and they don't believe he belongs there. They understand our unusual circumtances though, and have offered to help get him in if we want to go that route. It doesn't seem like the ideal place for him for a lot of reasons. But neither does his current school. It doesn't appear to be any better for our son, but it doesn't appear to be worse, either. Can't we take a step upwards, instead of down or laterally?

I don't know what to do. All I need is that magic winning lottery ticket, and I'd open my own school. I'd hire people who are patient and kind. I'd hire people that love learning, and love teaching, and think learning ought to be fun. And I'd welcome the aspies who don't fit into the NT schools yet also don't fit into the autism schools, and give a safe haven to the kids who struggle against so much.

I can dream, can't I? :)

"Every human being is the author of his own health or disease." --Buddha

Day 38

Wow, has it been that long?

MIL has been in the hospital 38 days now. A lot has happened since she was first admitted. We thought we were going to lose her a few times.

I thought I'd give you an update, especially since things have improved greatly. She was moved out of intensive care into a normal room, though on the same wing as the intensive care unit. I supposed that's so they can zip her right back if she takes a downturn. She is off the respirator. She is off critical condition. She is eating, which is fabulous, but unfortunately it isn't enough to keep a bird alive. So far, they still have the feeding tube down her nose. There was talk of removing it and surgically implanting a tube in her side, but they are holding off on that, to give her a chance to eat on her own, which would be preferable. She needs to be eating well on her own, or to have the tube in her side, before she can be released from the hospital. They might remove the nose tube in the next few days, just to see if that increases her appetite. Not sure on that point, though.

She's breathing on her own, though she gets nebulizer treatments every four hours. I'm not sure why this is happening. I'm not sure why she can't breathe well. I know for a while they said that the colitis pushed everything upwards, pushing into her lungs, and that pressure make it hard to breathe. But the colitis is under control now. So why hasn't this greatly improved?

She can only speak in a raspy whisper. That's better than the almost inaudible whisper. I don't understand why this hasn't improved either. I suppose the feeding tube doesn't help. Maybe that will improve as the tube is removed?

She tested negative for c. diff.!! That was great news. They still have us gown up, though. It's a precautionary measure, since her room can still be contaminated. That's okay. It's just good to know she is past that. That is one nasty illness.

They started her again on blood thinners last night. This scares us. She started to bleed the last time they did this, and there is a good chance it could happen again. They are trying a different blood thinner this time. They say they are going to watch her carefully, but we have found that each nurse's caseload is so huge, watching carefully is an impossibility. Frightening. She could bleed out on the blood thinners, and it could kill her. But they need to do this, due to the blood clot in her shoulder. If that isn't dealt with, that could kill her just as easily. Talk about being between a rock and a hard place...

We have made arrangements to have her transfered to a nursing home/rehabilitation facility when she is well enough to leave the hospital. The hospital staff makes it sound like this is in the near future, maybe as soon as next week, but I can't see that happening. She's barely able to eat, and even then, it's such a tiny amount that a baby couldn't survive on that. It's nice to know that they think it could be soon. I just don't see it happening THAT soon.

FIL is making plans for MIL to come home. He wants to have a contractor revamp the bathroom so that it could accomodate a wheelchair, or a walker. Hm. This seems highly optimistic to me. If there isn't some significant improvement soon, I don't see her getting to the point where she can survive outside of a medical facility. She can't take care of herself at all right now, and my FIL isn't able to take care of her like this either. She can't walk, barely talks, can't go to the bathroom on her own, can't bathe herself, can't hardly feed herself. How can she go home?

I know there could be vast improvement in rehab. But realistically, we're probably looking at an assisted living facility, at the very least. I know it could be possible, if she works hard at it, to make it back home again and have in-home assistance. But I don't know if she has that much fight left in her. I'm just not seeing it at the moment.

On the other hand, she has survived, which is far better than the hospital's expectations, so who knows? I guess it's time to grab onto a little faith, and see where it leads us.

MIL is out of intensive care!! And off critical condition! Today is day 32 since this all began.

"Health is the first muse, and sleep is the condition to produce it” - Ralph Waldo Emerson

In The Dark

MIL is resting. Really deep sleep. If you wake her up, she is confused, and thinks it's 1960, and that she's at home. No one knows for sure whether this is bad or not. The doc suspects that she is just so deeply asleep, that she's not fully waking up. I hope he's right.

They see no signs of neurological damage so far. That's good. We aren't certain yet that this is off the table. They are running more tests today, and I guess that will tell us more. They didn't want to run all the tests yesterday because they wanted her to rest.

We're told that she will probably be on the ventilator at least a week. It will take about three days for her to get some really good rest, without fighting for breath. After that, it sounds like they want to wean her off the ventilator, so that she'll be able to transition to breathing on her own.

Again, I have to wonder why all the vitals seem to be doing pretty well, and everything else seems to be going to hell in a handbucket. The infection seems to be under control, because the white cell count is in the normal range. The kidneys seem to be doing reasonably well, not perfect, but not bad enough to require dialysis or anything significant. Blood sugar, blood pressure, pulse, all in the normal range. (I don't know much about the c. diff., so I don't know if that's under control or not, though I suspect the white cell count would be high if it were not under control...?) Even her spirits were better.

So why does everything still seem to be getting worse? Is it just that her body is giving out? At this point, I'm beginning to wonder if she'll be able to ever go home again. I can't imagine, even if she makes it, that she would be able to return to an independent life. I would be surprised if she didn't end up in a nursing home, or something like that, for the rest of her life. If she can pull through, that is.

I hope I'm mistaken. I don't have a lot of experience with any of this. My expectations are merely guesses, based on what I'm seeing in the throws of an illness.

The family is all coming back again. Some had left for a few days to deal with their home issues. Now they are all coming back in full force.

I'm worn out. Dh is sick. He's so run down, I don't know how he keeps on his feet. He slept in this morning (to 9, if you can call that sleeping in - but it's better than 5 am). Ds is a happy camper after Halloween. It does my heart good to see him happy. And I'm relieved that his school project is behind us for now. I hate worrying about that and dealing with all the medical issues and a holiday and work, all at the same time. It's just too much.

I wish we had some solid answers. I guess there just aren't any.

Halloween Haven

Last night my company had an open house for Halloween. They invited everybody to bring their kids to trick or treat at the office. I didn't know what to expect, since they had never done this before, but I was definately going to at least stop in for a little while. Poor ds has spent so much time sitting in hospital waiting rooms, that he really needed some kid-time.

I'm so glad I went. I was surprised about the decorations. My boss hinted that she was going to get lots of stuff to make our department look cool. It was great. Spider webs, a huge spider, rubber rats, you name it. Very festive. All the other departments did the same. It was pretty neat.

Dh couldn't make it. That was the only chance he'd have to see his mom in the hospital, and we couldn't all be no-shows. So I suggested he just drop ds off with me at 5:00, and I'd bring him by the hospital when we were done. I figured even if it was during the 2 hour no-visitation time, they would likely make an exception for ds to just go to the window and wave at Grandma in his costume.

Anyway, they not only decorated at work, and had candy of course, but they also had a feast of goodies! Sandwiches, fruit cabobs, chips, veggie trays with dip, and a Chocolate Fountain, complete with marshmallows, pretzels, angle food chunks, nilla wafers, rice krispy treats, etc that we could dunk in the flowing chocolate! Ds was thrilled. They had games for the kids, crafts, coloring, all kinds of stuff. And the real topper was that he found someone from his school. He had such a blast. It was great to see. I was so happy for him, I was teary.

We never did make it to the hospital last night. MIL was so worn out that she was asleep, and they didn't want to disturb her. I figured we could always go there during the actual Halloween instead.

Ds has been so happy, and so good. He finished his major project for school. He had the presentation this morning. All finished on time, in spite the fact we were never home, and he had to do the whole thing on the fly between hospital vigils. I promised him a Bakugan (translation for non-parents: a modern day Transformers-type toy) if he worked hard on his project and turned it in on time. No problem! Even though we did kind of put it off for a while, it was still finished with lots of time to spare. I had a doctor appointment myself this morning, with my orthopedic specialist, so I was going in to work a little late. I told ds I would drive him to school. He was happy about that. No rushing, no pressure. It was a nice and mellow morning.

His presentation went well. He lost part of his costume along the way, but no problem. It's HOT today! And for the record: DH TURNED ON THE AIR CONDITIONER!! ON HALLOWEEN!!

I can't believe my big brother came to Illinois from Alaska and didn't even call. :*(

Venting

Seems like every time we start to see light at the end of the tunnel, something else happens to just blow us right out of the water.

Dh got a phonecall from the hospital today. They put MIL on a ventilator. Her oxygen levels were dropping way too low while she slept. They didn't know why, and were sending her down for an ultrasound and CT scan, and possibly other tests. They were going to sedate her and restrain her, to get the tubes into her to ventilate her, but they decided they couldn't sedate her due to the tests that they want to run. I hear as soon as they got her on the ventilator, she fell asleep. They believe it was because she was finally breathing well, and comfortable, so she finally COULD sleep.

Come to find out, the big problem is that she wasn't expelling CO2.

Dh is all freaked out. Me too, to be honest. He just went back to the hospital. The unknown is scary. They are waiting to see what her oxygen levels are. From what I understand, if her CO2 issue doesn't resolve on the ventilator, then it could be neurological...? That doesn't sound good.

I haven't spoken to any of the medical people. Dh is off to try to find out more. No one seems to really know for sure what is going on or why, and the test results are not back in yet.

Geez, I really thought things were finally turning a corner. When will this roller coaster ride level out some?

Good News!

Mil has been doing better! Her vitals are good, all the numbers are where they are supposed to be. Kidney function seems to be reasonably good, good enough to take her off dialysis. They're removing the dialysis port. Blood sugar good. She's moving more, showing more strength. Coughing a lot, which is exhausting, but getting out the bad stuff, which is good.

Still having trouble breathing. Doc says it's because of the colitis, that it's pushing everything upward and pressuring her lungs. He says it's just time on that one. Same goes for her talking.

They're talking about pumping food directly into her stomach. Real food, not the IV. They want to get her stomach working. They say this will kick start her appetite. Oh, I hope so. She's not eating at all.

They had her stand up today!! That's the first time in at least three weeks. Excellent news! Of course, it was only a moment, but gotta start somewhere.

Her spirits are a little dampened. She's frustrated. But she's not giving up! That's the best thing. As long as she's hanging tough, the better her chances.

Still not out of the woods yet. (Geez, I'm tired of this neck of the woods! I can only imagine how tired she must be of it.) Still in critical condition, still in intensive care. But we're getting a glimpse of daylight ahead.

Fading Away

I got a heartbreaking phonecall today. Dh called me at work, and told me "they don't think she's going to make it."

I've spent all day at the hospital. We're all devastated. The nurses say they've seen this before. She's just fading away.

Her numbers are okay. Her white cell count has returned to normal. Her kidneys seem to be functioning okay - the number isn't below one like they'd prefer, but it's still well lower than it was, still below two, and seems to be functioning reasonably well. Blood pressure is good. Blood sugar is good.

But she's worse. Much worse. She's not really moving at all anymore. Her coloring is bad. Her voice wouldn't qualify as a whisper. Her breathing is very labored. They may put her on a respirator.

The doctors say she is just so weak from fighting the infection. Like her body is just giving up. She seems to be emotionally giving up, too. She asked me to get her youngest son back here. (He had gone back home, when we thought she was improving.)

BIL is on his way. So is nephew. Maybe more. They'll arrive in the middle of the night.

I'm reminded of other phone calls, long ago. Similar telephone conversations. The voiceless patient in the bed. The sterile equipment and people of the ICU unit. The helplessness. The same prayers. The same pain.

Part of me believes that she would make it if she would just have that will. At the moment, she doesn't have it. Will she get it back, before it's too late?

A Downturn

The news today was not so great. MIL's white cell count has continued to drop. Now it is BELOW normal. That's not good either. It could be because of the dialysis.

Her breathing is still quite labored. A resperator is still not out of the question. This too could be because of the dialysis.

She's not eating much. While she seemed to have a better night, and dh stayed all night without any calls into her room after about 2am, she was struggling this morning. Another panic attack, probably brought on by her breathing troubles.

She's not eating well today. Says she's not hungry. She's so tired, they aren't even going to attempt to put her into a chair today. (They've been very insistant about it in the past.)

I'm hoping the day turns around some.

“To wish to be well is a part of becoming well.” -Seneca

Numbers Down

Got good news lately on MIL! Her white cell count is NORMAL! Woohoo! That's really good news. That indicates that the infection is being brought under control. (The infectious colitis).

Her kidney numbers have also improved. I don't know what the numbers are right now, but I know the docs are happy with them. (They were 2.2 a few days ago, so it's below that.) They don't have full kidney function yet, but there is significant improvement on that front.

The fluid that has built up in her body is now coming down. She has lost a lot of weight. The terrible swelling in her hands and arms is nearly gone. And she's gaining movement in her arms and legs! She wasn't able to lift a spoon to her mouth earlier this week, and now she can feed herself. (She doesn't do it enough, but she can do it.)

The doctors want her to EAT. And sleep. She wasn't doing much of either. However, today I heard she ate more than she has all week! Wonderful news! It's not enough for a bird to live on, but it's a great start and we were delighted to hear it.

She slept a lot today too. I'm not sure if that's good or bad. She needs sleep, big time. But the problem is, she's not sleeping at night at all. And in the middle of the night, she gets panic attacks. Bad ones. We're hoping she'll start to get a bit of sleep at night, and maybe get past those panic attacks. That would help.

The c. diff. is still an issue. It's not gone yet. I have no idea how long it takes for that to run it's course or get under control. But I hope it's soon.

And her breathing is still very labored at times. She's getting breathing treatments every so many hours. They help. But it can get bad in between treatments. And she's so weak she can hardly talk. Her voice is a whisper, and breathing and talking seem like too much effort. It really is disconcerting. I want to see this improve, and soon.

She's still in critical condition. And she's still in intensive care. But she is definately showing some signs of improvement, and I hope that soon is across the board. She made a true effort to eat today, and that's wonderful. If she continues to fight back, we could soon see a big turnaround.

But overall, today is FAR better than a few days ago. :)

Bil and nephew left to go back home, at least for now. Sil is still here. Other sil might come down tomorrow, I'm not sure, but it would only be for the day. (Seems like a lot of driving for so little time here.)

Anyway, lots of good news this week. I'm hoping that trend continues...

Hair Today Gone Today

Well, I finally did it. I got my hair cut. It's been ages since I've had it cut, and it was so grown out, out of shape, and just a mess. A friend has been encouraging me to go to her hairstylist, and I finally grabbed the phone and called.

I'm so glad I did. I usually have to cut my hair every 6-8 weeks, tops. It's been well past that point. My hair grows fast, and it's thick. And rather curly. (I know, my avatars don't always display that, but there aren't many grey hairstyles, and not many curly styles to choose from.)

I could only schedule an appointment during visiting hours, which was not ideal. But there was no getting around it if I wanted anything done in the near future.

Boy, did I need that. It was such a TREAT! The stylist was really good, and she really listened, and she did a terrific job. I'm delighted with the results. And I feel ten pounds lighter with all that mess hacked off. I think she swept up the makings of a small poodle from the floor. (And you wondered where those dogs come from, didn't you.)

I even got approvals from dh and ds.

I walked out smiling. And it occurred to me that I haven't really felt much like smiling lately. Even though things are looking up with MIL, I'm just so tired and stressed out that even when I do smile, it doesn't actually feel all that happy. But today I felt Happy.

I told the friend that sent me there that I was considering having my nails done too. How utterly shocking. I'm not a girly girl. I'm more like one of the guys. I rarely wear makeup, perfume, and haven't worn a dress in I don't know how long. I use my fingernails like tools. But for some reason, I have been craving having my nails done! Silly, I know. Why should a girl who doesn't dress up want to do her nails? I wonder if it's a hormone thing, lol. Maybe as I'm getting older, my girly side is getting bolder.

My friend asked the nail tech at the salon if they do artwork on nails. You see, I confessed that I want to have puzzle pieces painted on my nails. (Big surprise there, huh?) To my delight, they said it would be 'a piece of cake.' Yay!

Isn't this goofy? I've had one, count 'em, ONE manicure in my whole life. I haven't even worn nail polish in over a decade. And now, here I want to get acrylic nails, and have them painted with puzzle pieces. LOL! Somewhere there is a swine sprouting wings...

Maybe it's just that I need pampering. I need to feel like a girl again. I've spent too much time in cold, sterile environments and I need to feel and see something pretty, if only just my nails.

I can't believe I'm going to do this. It's so out of character. I may not be able to schedule it for a few weeks, but I will get it done in the near future. Maybe I'll even wear a little eye makeup tomorrow... (gasp!) ;)

Giggles

Dh and I had been talking about how MIL was afraid of the dialysis, and believed that if they started that treatment that it would be the indication that this was 'the end.' No reassurances seemed to help, and she remained frightened and distraught. A friend suggested calling her church, and I thought that was a great idea. So I did.

When I arrived at the hospital, the pastor was there. My inlaws seemed really pleased to see him, and Dh's aunt and uncle was pleased too. He blessed her and said a prayer, and talked for quite a while. I hope it helped her find some peace.

She was really worn out, and wanted to rest after I left, so we were all hanging out in the waiting room. My MIL's ex-neighbor came to visit again. She's a nurse, and has been very helpful to us, and helpful to my MIL too. She was going to leave to watch her son's football practice, and asked if she could take ds with her. I jumped at the chance, because I think he's spent far too much time in the hospital, and needed a little diversion. Her football son is ds's age, and she has an older daughter and a younger son with her. Ds and the younger son, who shares his name, were having a blast. She said they'd be gone about an hour.

I was a nervous wreck, just turning him over to someone else, even for such a short amount of time. But I gave her my cell number, and let him go have fun. She has two adorable rambunctious boys, and she's a nurse, and I knew she could handle my son, even if things didn't go well.

Of course, I had nothing to fear. They returned about an hour later, all smiles. She commented on how my son just laughed the whole time. He was in a silly mood I guess, and laughed at anything they said to him. They all got laughing at that, and they were all in a fit of giggles. He has such a contagious laugh. It was so good to see. I was thrilled to see him get a brief respite from the quiet hospital lobby, and have some fun with other kids. It did my heart good, and I thanked the ex-neighbor for being so thoughtful.

And I got some sleep last night, too! So the day started badly, with lots of bad news, and MIL telling everyone she was going to die, but it really turned around at the end.

The day ended with sleep, and giggles, and more sleep.

Life expectancy would grow by leaps and bounds if green vegetables smelled as good as bacon. ~Doug Larson

MIL is convinced it's the end and she's scaring the begeebees out of her kids. I called her pastor to come talk to her. Hope that helps her.

Dialysis starts today.

It was a bad night last night. Kidneys failing, resperatory failing, blood clot, lots of bad news. And no rest for the weary.

“Sometimes the most productive thing one can do is to sleep.”

YIPPEE!! Had our 1st full night's sleep since this hospital thing started! Feel like a new person! :)

Mil had a not-so-good day. Numbers are still improved, but breathing is very labored. Trying new meds.

It's 3am, and the hospital just called. MIL is demanding to see dh. Medically, everything is the same, but she just wants someone there.

What Goes Up

Thankfully, the bad numbers are all starting to come down. Wonderful news! The white cell count has dropped dramatically. No, the numbers aren't even close to normal yet, but still, they are making significant drops. The kidney numbers are coming down as well. Dialysis is still not off the table, but at least there is improvement there as well. Blood sugar is down a bit too. All very good signs.

Her spirits are better, and they got her out of bed and into a chair (recliner) a couple times today. She looked so much better when sitting up. Ds got to come in for just a moment and wave to her through the glass. The nurse wasn't too happy about it, and we got a stern lecture, but I didn't really care. It made her happy, and it made ds happy, and it was just a quick peek in. Yes, I know all the reasons why the hospital doesn't want kids in there. The nurse was quick to explain them all to me. (After ds went back to the lobby.) I suppose I'm on the shxt list now. Wouldn't be the first time.

Well, I better get some sleep. The family again told the hospital staff to call dh if MIL wants company in the middle of the night. That's ten straight nights. Plus ten straight mornings that he's also had to be at the hospital for the first early visit of the day.

I need sleep.

Mil's numbers are all improving! She's doing much better, but still not out of the woods yet.

The family told the hospital to call dh if my mil wants company in the middle of the night. Geez, he hasn't had a full night's sleep yet.

Happy Sweetest Day to all my sweet internet buddies!

The I in illness is isolation, and the crucial letters in wellness are we. -author unknown

Just got a call from the hospital at 6am. Dh is on his way to see MIL. Her vitals are ok right now, but she is depressed.

MIL was allowed "food" today. Juice and ice chips. Hey, it's better than IV! It was a big deal to us.

MIL's test number are improving very slightly. Medically, it's nothing noteworthy. But we celebrate every bit of good news here.

Dh ran off to the hospital. We got a call. MIL was going for a test, and was convinced she was about to die. FIL & SIL went too.

So far, no significant change with MIL. Numbers are still not good.

Dennis Leary on Autism

LEARY ANGERS AUTISM ACTIVISTS
from UK's Daily Express at http://ping.fm/z1jNG


Wednesday October 15,2008
Actor DENIS LEARY has sparked outrage among activists for children with autism - insisting parents are just using the disorder to explain their kids' academic "laziness".

Leary talks about the brain development disorder in his new book Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid.

He writes: "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks... to get back diagnoses that help explain away the deficiencies of their junior morons. I don't (care) what these crackerjack whack jobs tell you - your kid is NOT autistic. He's just stupid. Or lazy. Or both."

But the actor's comments have sparked outrage at The Autism Society of America.

A spokesperson for the group tells the New York Post: "For Mr. Leary to suggest that families or doctors conspire to falsely diagnose autism is ridiculous... (His) remarks reflect the same misconceptions of autism being caused by bad or unemotional parenting that were held over 50 years ago."

Firecracker

My MIL was a little better last night. To us, it looked like a lot better, but medically, not a whole lot different. But it's hard not to be excited when she is sitting up a little bit, and talking a lot, and being much more coherent. She also didn't doze off every few minutes like before.

Medically, the numbers have barely changed. But that doesn't mean there aren't positive signs. Her kidneys are outputing a little more, and the color is not as dark. They don't seem to be functioning like they should, but this could be a sign that things are starting to turn around. Time will tell. She is not getting sick on the antibiotics (up or down), so that's gotta help. They've been giving her breathing treatments, so her labored breathing is much improved (though that's not really an indication that the infectious colitis, the c. diff., or the failing kidneys are improving). They have to give her insulin because her blood sugar is quite high, but they think that will be temporary.

Sadly, we haven't heard that any of the bad numbers are coming down yet. The white cells, the kidney function, etc, all the scary stuff, doesn't seem to change much. However, the good signs may be an indication that the meds are starting to have an effect. We're hopeful.

But it was great to see her chatting again, and being really feisty. She was even trying to play matchmaker for her young and pretty nurse, lol.

She told dh that she thought she was going to die. She dreamt that my FIL (who is very handy and crafty) was carving her tombstone. Eek.

After her first bout of physical therapy, she commented that the two male PTs tossed her around "like a corpse in a morgue." (We'll have no more talk like that thank you very much!) Oh, and she also commented on her assumptions about their, um, sexual preferences. Iyiyi.

She was funny. Her wit has returned. We all got a big laugh out of some of the remarks she was making. She's a real firecracker. It felt wonderful to hear her talk like her old self again. It's hard to imagine that she could not be improving medically when we see so much improvement in her manner.

I'm really hoping for some good news from the docs now. And the hope doesn't seem so farfetched.

Woohoo! Some improvement tonight!! Small improvements, but we'll take all we can get!

Thanks to all my internet buddies that have been offering kind words of support! I appreciate it!

DS was sick this morning. Bad cough & snuffles. Kept him home with dh.

In the Thick of It

Last night was not a good night. Upon arriving at the hospital, I found out my MIL had not only shown no signs of improvement, but had some slight signs of worsening. Nothing real severe, yet. But while her kidneys are producing fluid, they are not really filtering as they need to. And this is having negative effects on the rest of her system. You know, if the kidneys are happy, the rest of the body ain't happy.

I had the feeling in visiting with her last night that she didn't really recognize me. Now this is probably the meds, I know. But it's disheartening. We've been wanting to see improvement.

In the morning yesterday, when the family was meeting with the doctors, my BIL asked if my MIL was out of the woods yet. At that time, there were slight improvements. Nothing huge, but hey, we'll take any positive news we can get, right? But the doctor was quick to shut him down. He said, "She's not out of the woods yet. In fact, she's in the thick of it." It was a very sobering statement.

It was after that that we started to hear bad news. The kidneys weren't filtering. Their output was darkening in color, which wasn't good. The white cells have not changed, have not decreased.

We had hoped by now there should be some significant upturns. The meds should be kicking in here. I realize that for the first couple days she couldn't keep the meds down, so we've been trying to be patient, but we really hoped by now there would be some good news.

Dh went back to the hospital late last night. I stayed home with ds, who was unusually exhausted. Dh said that he heard some positive things. The white cell count had dropped very slightly! Nothing to get excited about yet, but we can be hopeful here. The kidney's output was not as dark as earlier. Another good sign, but nothing too significant at this point either. We have our fingers crossed. Could the meds be kicking into gear?

Too soon to tell yet. And too small of an improvement to really indicate anything.

But we're hoping.

I don't want to go to work tomorrow, but I must. I'm so tired from all the hospital stuff. Haven't slept well either. At least ds is better.

MIL showing slight improvement. Infection not improving, but not getting worse. Kidneys showing tiny bit of function. Color much better.

DS is okay! No more tummy upset!! :D

If I had my way I'd make health catching instead of disease. ~Robert Ingersoll

MILs kidneys are not kicking in like we hoped. This isn't good. They'll talk to us tomorrow about what our options are.

DS made a picture for his grandma, to cheer her up. :)

MIL showing small signs of improvement! Kidneys functioning a little, a little less pale, more animated.

Oh no. Ds is still showing symptoms. No worse, but not gone yet either.

Long Night

The hospital just called. That was the second call we've gotten since just before midnight. It's about 2:45 now.

My mil is in the critical care unit. Her blood pressure was dropping. The call just now was the surgeon. He said something about colitis, and that they were pumping her full of fluids, but that this could possibly fill up her lungs but they have to do it to save her life. She'd be put on a respirator if that were to happen. They are worried that the colon could rupture, and that's when they'd have to do surgury, they would have to take out and remove a portion of her colon, and this would be heavy duty surgery. She's not in the best condition for this, considering her age and her advanced dehydration.

I don't know if I have all that straight. It's hard to get woken up in the middle of the night and listen to a barrage of medical terms. And I'm getting it second hand from dh, who is equally sleepy.

We've already called in the siblings, and they are expected to be here sometime in the morning. They're coming in from out of state. Everyone is very worried, very afraid.

Dh called the hospital back just now, to see if he should go down there. My fil is on his way. (We called him too.) The hospital nurse was standing beside my mil, and said that it was up to him, whether or not he come down there, but also added that my mil was pretty scared, and it would probably make her feel better if he did. He'll leave shortly.

Man, I hate this hate this hate this. I mean, I know nobody doesn't hate it, but I also hate the memories this stirs in me. Memories of my own parents, of my mother's battle with cancer. The late night phone calls. The siblings keeping each other posted. The waiting, the hoping, the fear. Emergency surgeries. The doctor's slam of too much information. The glazed expressions. The deer in the headlight eyes. So now I know much more than I want to know. I also know what it's like if things don't go well.

Have I every told you about my mil? I love my mil. I know, I know. Doesn't fit the cliche. But I do. She ended up being like another mother to me. And she's cool. She's not like the stereotypical mother in law. She's been a friend, too.

My mil is also into crafts! It's been such a treat for me. There wasn't anyone in my immediate family who was into crafts. My own mother was very supportive, but she didn't really understand it, didn't know what I was doing, wasn't really into it, other than to enjoy the fruits of my labors, and to be glad for the way it kept me busy. (We didn't have Gameboys or Wiis when I was a kid, so you couldn't just "plug us in," so to speak.) But I was so into crafts. I was teaching myself to knit when I was less than 8 years old. And I'm good at it, too. Very good. At all the crafts I do. So is my mil. And that's really neat to be able to have someone not only understand my love of crafts, but be able to share in it with me too.

And like my own mother, my mil is the glue that holds this family together. I don't know what will happen to this family if she isn't around to keep us united.

And my ds loves his grandparents. His grandmother is his oasis. Whenever there's been trouble at school, he has always been able to come to grandma for that unconditional love that only grandmas can give. I can't tell you how much we BOTH need that.

We all need her. We all love her. She's just got to pull through this.

Dh is gone now. He left a few minutes ago. And I'm here wallowing in my shadows of the past, and battling my fears of the present.

God's probably tired of hearing me pray by now, lol.

Scary

Yesterday I came home from work to find out my MIL was rushed to the hospital.

She had been ill for a while. They had her on antibiotics for an infection, bladder I believe, but she had an allergic reaction to the antibiotics. It was not pleasant. Then they started her on a different antibiotic. And that made her sick to her stomach.

She didn't feel good when she watched ds this week. She had some diarrhea and just feel lousy. But she said she felt up to watching him at the time. She was going to call her doctor later that day. But she didn't do it.

When I picked up ds, my mil was still sitting in the same chair as when I left, with a blanket, and looked like she hadn't moved. She didn't look better, like she told me she did on the phone. I told her I'd take her to a doctor. I offered to take her to the emergency care clinic. I also offered to get her some acidophilus or yogurt. She told me she had a bunch of yogurt in the fridge, but she stopped eating it because she thought maybe that's what had given her the runs. I thought that was unlikely and told her so. I encouraged her to eat that yogurt, and lots of it.

The next day, dh asked her if she called her doctor. Nope. She had an appointment on Thursday. She'd just wait until then. I told dh, "you know what'll happen, don't you? She'll go for that appointment, and the doc will tell her she's dehydrated and throw her in the hospital. You can't be that sick for that long and not get dehydrated!" He thought I was probably right.

Well, she never got to that appointment. She was so sick Wednesday night. My fil finally tried to get her to get in the car so he could take her to the emergency room, but she was too weak to walk to the car. (It was only about 15 feet or so to the car.) That's when they called the ambulance.

We all jumped in the car and went to the hospital to meet them. My fil didn't seem to know much about what was going on, except that she was on an IV. He thought maybe she'd go home Friday. I was more than skeptical. I thought that sounded crazy. We started to figure out that my fil had no clue what was happening because he couldn't hear what was going on. He's nearly deaf. He couldn't even carry on a phone conversation with dh, because he can't hear the darn thing.

This wasn't working at all. Nobody knew anything. We couldn't even find out what was wrong, other than the fact that the antibiotics weren't agreeing with her. Dh and I started looking for charts or anything with info on it. There was mention of her being on antibiotics and pain meds, and the fact that she was on a heart heathly diet. That was about it. I noted that she was in a private room, and thought it odd, but then again, maybe they'd be moving someone else in before the night was through.

Then a nurse came in the room. My mil couldn't even prop herself up to eat, she had to be lifted up the bed and propped in place. (Geez, if she's this weak that she not only can't walk, but she can hardly feed herself, they better not be sending her home the next day like fil thinks.) The nurse said something about doing an ultrasound on her tomorrow, and my mil asked, "Won't I be going home tomorrow?" The nurse looked at her with a shocked expression. Tomorrow?? Oh no.

Then she turned to us and said, "When you come back tomorrow, look for an orange tag on the door. If you see that, then you'll have to suit up in gowns before coming in." Huh?? Gowns? "Well of course it will depend on how the tests come back, but it's pretty likely that you'll have to gown up."

I quickly asked, "What are the tests for?" Wasn't she just having some bad reaction to the meds?

That's when she told us that they were testing her for c. diff. Oh no. I've heard of that, and it can be pretty nasty. Fatal even, if you get it bad enough, I thought. She also said she was being tested for MRSA. Holy smokes. I knew that was a staph infection, and can also be fatal. Especially dangerous for the elderly, right? I looked at dh, but I could tell by the confused look that he had no idea what either one was. I knew this was very serious. And contagious. And my son was in the room!!

The nurse gave us all instructions on washing up before leaving, and showed us where the Purell was. (Antibacterial stuff.) I have one thought on my mind at that point, and that was that my son had a bout of diarrhea last night. At the time, I had attributed it to the fact that we had Chinese take out for dinner, and maybe it was a little exotic for his tummy. But now...??

We got home and I pulled out the acidophilus and had us all take some. I also put Purell in the bathroom and by the kitchen counter, near where we come in the house. We were all sufficently disinfected. I hope.

None of us had any direct contact with my mil, except my fil. So I was feeling a little more at ease. After all, ds hadn't had any diarrhea since the night before, and it was probably just something he ate. Dh had an little upset stomach after eating too. What were the chances huh?

But in the back of my mind, I couldn't shade the worry that ds had spent all day Tuesday at Grandma's. But I was being paranoid, right?

In the middle of the night, ds woke us up by running into the bathroom. Again and again. Omg. Tell me he hasn't caught this!

I was on the phone to the doctor first thing this morning. I explained the situation, and the symptoms. The nurse was very understanding. I said that I didn't mean to come off as paranoid, but with the stuff with my mil, I just would rather err on the side of caution, you know?

The doctor was pretty cool about the whole thing. He's taking a let's take this slow approach. Since ds is not feverish, and he's doing pretty well otherwise, we're just going to watch this for a few days. I have a number to call at any time, if he takes a turn for the worse. He'll run tests on him Monday, if he isn't better. (Sooner if he worsens.)

I felt a little better after hearing that. They gave me practical advice for treating him in the meantime (bananas, yogurt, etc). And I felt like I wasn't being so crazy after all. They were all concerned too, but optimistic about how ds is feeling currently.

My mil hasn't been doing so well, however. The meds have her a little out of it. She was slurring to me, and pronouncing words funny ("annabios" instead of antibiotics). Very weak, very tired. Oh, and the meds make her very nauseous. That wasn't pleasant either. Poor dear.

The nurses said that it will take a few days for the meds to really kick in. Okay, so that gives us a timeline. We'll be looking for some sign of improvement by Monday morning, at the latest. I hope it will be sooner. I don't want her released. I want her in there and being taken care of. But I do want to see some real improvement, and SOON.

The Apple of my Eye

They started a new program at work, where we can work 4 ten-hour days. Unfortunately, I can't do that, because they say you have to start early, not work late, and I have to be home to get ds off to school. However, my company was flexible, and offered to let me work shorter lunch hours so that I could leave early one day. A very nice compromise.

Yesterday was my early day this week. And wonderful timing it was! Ds had a very bad day at daycare on Monday, so having me get off early on Tuesday was a real blessing. He was only in daycare for minutes, before I arrived to surprise him.

And what did I have planned for my little apple fanatic? Why, the apple orchard, of course!

We ran up to a local apple orchard that had sadly been devastated by a tornado last year. The twister had knocked out most of the buildings, but spared the majority of the apple trees. They did a massive cleanup and restoration on the place, and re-opened in record time this month. I was delighted to hear it, as the loss of that orchard seemed like a terrible blow to this area. It's just one of those rare places that you can go to with the kids, and everyone has a good time. A place that becomes a tradition. Thank goodness the tornado didn't take that away from this town.

Ds had a good time. He kept insisting on going Downstairs. I'm not even sure he knew what was down there, but he wanted to go, so we went. Well, downstairs was a small restaurant that specialized in (what else?) apple pie.

Strangely, my son (who could easily eat a half dozen apples in a day if we'd permit it) does not like apple pie! I knew this going in, so I let him pick whatever he wanted to order, then I got the pie with the intention of letting him try the first bite. I'm not sure what it is. Perhaps it's the fact that the pie was hot (well, just kind of warm, but he won't eat anything warmer than room temperature). Or maybe it's the fact that it's cooked at all. Or maybe the combination of sugar and spice isn't balanced to his liking? Ya got me. But he gave the pie a six on a scale of one to ten. Not a good score from my apple connoisseur. I, on the other hand, thought the pie was yummy, and thoroughly enjoyed it. Ds was completely content with his ice cream.

His favorite part was the ability to taste test all the apples. He was in apple heaven! He went in with a Macintosh bias, and the taste testing didn't sway that. But he did find several types that were running close seconds, thirds and fourths.

Letting my son loose in an apple orchard is akin to letting the average child loose in a candy store. (Any parent should be so lucky, huh? :) And he doesn't like pop, either. Sensory issues can have their up side!)

We left with an armload of apples, donuts, apple butter and fudge. (My wallet is still whimpering.) Then we had to make a pit stop at Grandma and Grandpa's on the way home and share out booty with them.

It was just a nice time. It felt wonderful to spend some good one-on-one time with my son. It's been a long while since we've had the opportunity. Now I'll get more chances, with this new work schedule.

He's already hinting at the pumpkin patch. Hm, maybe a little closer to Halloween...

Validation

We just came from the autism specialist. That made me feel a lot better. He pointed out how well ds is doing in some environments, versus how badly he's doing in other environments. At that point, no medication, no therapy, no discipline is going to vastly improve how he does at the bad environments. You need to provide supports there to help him function better.

So we didn't really change much of what we're doing. A slight tweak to the meds, based more on his huge change in height and weight than anything else, and a recommendation for a place to go for an advocate.

Dh and I were just talking. We keep hearing the same things from all the doctors, not just this one. Our son does well when treated a certain way, with a lot of patience, with a slower pace, with RESPECT (that was a new revelation), and with consideration for the sensory issues he faces.

The school and daycare treat ds like he's a behavior problem, and that he needs to be punished. That's not working. So while they keep turning to us and insisting that we "do something!," the real problem is that THEY aren't doing anything to accommodate his needs. They treat him as if he were NT, and he's not. They punish him, which doesn't help. They promise supports that they aren't following through with. They don't acknowledge that he needs to proceed at a different pace, that his sensory issues exist and need to be respected, and that if they insist that it's their way or the highway, then he won't succeed in that environment.

So we didn't get any instant fixes from the doctor, though we didn't expect to. But we did get assurances that we're doing the right things for him, and validation that the school and the daycare are not.

WILL the school provide the appropriate support? I stopped hoping for that a long time ago. Will the daycare? They haven't yet, but I haven't completely given up there. The last time we had a serious problem there, ds was suspended, and he was threatened with expulsion, and we pulled him out before he was completely thrown out. But that was before ds was diagnosed with autism. So we'll see if the autism diagnosis changes anything. They have therapeutic services at the daycare, though we've never seen any services provided. We've been told that they have been given special training in autism, though we've seen little evidence of that either. I guess this could go either way at the meeting with the daycare. They'll either threaten to throw him out (or just do so), or they'll offer support. We'll see how it goes.

The doc couldn't really support us medically. But he could support us emotionally, and that really does help. I'm feeling better, and feeling a little more confident about facing the school and the daycare staff. If it blows up in my face, so be it. I guess it wasn't meant to be.

Daycare Woes

The daycare called me at work today. They were not happy. Ds had gotten upset, and he threw a ball at a staff member, hitting her in the eye.

Now they want to call a meeting with one of the caregivers, the caregiver's boss, and us. Oh goody.

So now along with the school calling an iep meeting right after he took off running during a fire drill, and with the daycare calling a meeting after he threw a ball at someone's face, I guess you could say it's all sort of falling apart.

I'm pretty much at an all time low. I don't know how to help my son. I don't know how to just plain live anymore. It seems like everything is SO hard! It shouldn't be this difficult. It just shouldn't.

I don't see how to improve this situation. My son isn't like that at home, so I don't know how to fix what's wrong at school and daycare. I'm at a complete loss. My son would never hit someone with a ball, not at home. Why does it happen there? How do I have any influence on something that's happening out of my element? They want me to put an end to this behavior, but I never deal with this behavior! So what do I do?

Great time for the behavior therapy to be yanked away, huh?

I do have an appointment with the autism specialist tomorrow. Perhaps that will help.

I think I need sleep. A lot of it. Things will look better after a good night's sleep.

She'll Multiply

Quote for the day:

'Whatever you give a woman, she's going to multiply. If you give her sperm, she'll give you a baby.

If you give her a house, she'll give you a home.

If you give her groceries, she'll give you a meal.

If you give her a smile, she'll give you her heart.

She multiplies and enlarges what is given to her."

So - if you give her crap, you will receive a bucket full of shit.

Love and appreciate all the women in your life.

(Thanks to Cathi for this one.)

Heartsick

Tonight was the school's open house. It only lasts an hour (from 6-7), so dh and I figured we'd both go and meet the teacher formally, and see what the classroom environment would be like.

We got there right about 6, when they said it would start, but discovered that the teacher's presentation wasn't until 6:40, and there was nothing going on between 6 and 6:40. So we wandered around the school, and went out for dh to have a smoke or two.

In strolling through the building, we did cross paths with his teacher. I had met her once briefly, as had dh at a different time. She didn't really acknowledge us. I would have thought she'd come up and say, "Hi, I'm Mrs. So-and-so, and I'll be your child's teacher," or "Hi, I remember you from registration. I'm really looking forward to a good year," or something to that effect. When it didn't happen, when nothing happend, I was starting to feel out of place. It's not that we were being singled out or anything. She didn't greet any of the parents that way. The whole event seemed poorly planned. Or maybe poorly communicated. Perhaps that's more accurate. Looking back at it, I guess we were only supposed to show up for the 20 minutes that our teacher gave her presentation, not the whole hour. Oh well. Not a big deal. We just killed the 40 minutes hanging out. I chatted a little bit with another mom that I hadn't seen in a while, so that was nice. I don't get to chat with other school moms.

During the teacher's presentation, she handed out a flyer that talks about the grading percentages and such. It also talked about The Field Trip.

I'd heard about The Field Trip previously. I capitalize that deliberately. This isn't a plain old field trip to the local museum or zoo. This is a major Field Trip. It's for all the kids of his grade level at the school. They go to this facility at the forest preserve, and they stay there for three days and two nights. It's the buzz at the school, and all the kids are excited as all get out, even though it's not scheduled until the end of the year. This isn't simply a field trip. It's a right of passage.

There are rules for going. You can't be in any major trouble. (Hm, can you say meltdown?) And you have to participate in the class fundraising projects. (Yes, my boy, you lack social skills yet you must sell something or greet parents at a function.) They keep track of who participates in raising money and who doesn't. And there are many fundraising projects. There have already been two opportunities, and they've only been in school for three weeks. If you don't participate in fundraising, you either don't go, or you pay the full rate to go. They are trying to raise enough money so that all kids go at no charge.

Kids that couldn't attend The Field Trip could either stay home those three days, or they could go to school. However, they would not be permitted to hang out with the older grades at school. "That would be too much fun." They were going to be having a blast at The Field Trip, and those who couldn't go would NOT be permitted to have fun at school. They were to WORK. They would be assigned to the younger classrooms. This would not be fun for them. (Presumably, the ones staying behind would only be doing so if they had been naughty. Everyone else would, of course, attend.)

At the open house, there were lots of questions about the Field Trip. Dh and I had a lot of questions of our own. This was new territory. Ds away from home for 3 days without us? That would be a first. I raised my hand, and asked if they would be taking any parent chaperones. (She didn't know, but would let me know.) I'd hold off more specific questions until another, more private, discussion.

The presentation came to a close shortly after that, and dh and I were walking toward the door, but got separated in the crowd exiting. The teacher came up to me. She told me that she didn't think they wanted any parents to come on the trip. I smiled awkwardly, and admitted, "I didn't think you'd want to do this without me there." I told her I didn't know how they wanted to do this field trip - that's why I asked. (I guessed that they might be glad to have me along, that I could assure that things went smoothly with ds. It didn't sound like it was going to be welcome, from this conversation, though.)

That's when she told me that she didn't really know how all this would work either. She said that on this Field Trip, they were not equiped to deal with meltdowns. They couldn't have one of the adults stay with ds, for example, when they were on the hike. They'd have to keep going. There wouldn't be anyone that could be assigned to deal with him.

Oh, I see.

And she didn't know how all this would be organized. We'd talk. As the time got closer, we'd go over all this. She's not sure. She didn't know if they'd want me to go. She didn't know if an adult to watch him was possible. She'll have to ask. And maybe we wouldn't want him there. That would be fine. But they've never dealt with this before. I don't know how'd we work it out. After all, it will be a new situation for him, and new stuff is hard for him. But we'll talk.

Um, there's a problem with putting this discussion off. For one, I have a boy in that class who is hearing about this wonderful Field Trip, and how they will all love it, and "remember it for the rest of their lives." (I heard that phrase more than once tonight.) They will be working their butts off raising money between now and the end of the year, to assure their paid fee. They'd be on their best behavior, to "earn their right to attend." You can't have my son listening to all this every day, and then tell him, "Gee, sorry. Even if you have been good, and even if you did raise all the money we wanted you to, you still can't go, because...well... because you're different, and we just don't know how to deal with you, and we don't have any ability to make accomodations for you."

No way.

I'm just heartsick. What am I supposed to tell my son? I suppose the whole discussion is moot, because the likelyhood that he could behave well enough to "earn the right to attend" is pretty slim. Ds himself told me that "there's no second chances." He's heard that at school. Oh great.

I don't want him to get his hopes up for something that's not going to happen. I feel like he's being set up to fail. Not on purpose, but geez, let's be realistic here. They can't deal with his autism as it is. They already feel that "what he needs is discipline." That's bologna, but my point is that his meltdowns will be treated as misbehavior and a discipline issue, and he will probably not be allowed to attend anyway. I can just imagine that his first real meltdown will be punished with exclusion from The Field Trip.

How can he win? How can he go? What are the chances that he can go all year without a meltdown? At this point, he's going to know that if he gets upset, they'll tell him he can't go, and that will throw gasoline on an already volatile situation. If he thinks he's lost control, and will now be left out, he will explode. How can he not?

You've dangled this "trip of a lifetime" under his nose, and you'll yank it away if he can't maintain neurotypical behavior, and he's not neurotypical, and he can't maintain your concept of "good."

My son is not a bad kid. He is just trying to get along in an environment that is always hostile to his senses. He's trying to deal with an educational system that doesn't understand how his brain works. He's trying SO hard to be the good kid you want him to be, that he doesn't even know that he's already good.

He's not a bad kid. He's just struggling. And he needs some patience and understanding.

He wants to go on this trip, because everyone else made him want to go, and how can you do that to a boy that isn't going to be permitted to go? How can you break his heart like that? Can't you see how hard he tries? How can you look him in the eyes and tell him that even if he "earns the right to attend" by being melt-free, he still can't go because you can't accomodate him if the new situation of The Field Trip proves to be hard to cope with?

I wish I could pull him out of that school right now. They are really going to hurt him with this Field Trip, and it's just plain wrong. Why couldn't they have warned us about it before the school year began? Obviously this Field Trip is a HUGE part of the school experience for this grade. Why couldn't they have mentioned it to us, and asked if it could cause problems? Couldn't we figure out some way so that my son didn't get hurt by it?

Time to just bury my head in my pillow and have a good cry. Tomorrow I'll try to think of how to explain to my son how he's probably not going to get to go on that wonderful Field Trip. But not right now. My heart hurts too much to think right now.

3rd Week

At this time, dh and I are starting to wonder which will come first: will he get kicked out of school, or kicked out of daycare?

At daycare, we had two major problems. Ds was upset that he forgot something, so he just walked out of daycare. When the caregiver went after him, asking where he was going, ds yelled back, "Quit following me!" I hear he also tried to kick the caregiver when he tried to return him to the daycare. On another occasion, he was being hassled by another child, so he got upset, which ended up with him spitting (???) and hitting, followed by him running into the bathroom and holding the door closed so they couldn't get in. I'm wondering if I got the story right, because ds has never spit at anybody in his life. It may have been the other child, I don't know for sure. When they call me, it's so loud, and so much is going on, I don't always follow what is happening. And when the chaos clears, they just get off the phone and go back to business.

We had a long talk with ds, and suggested that he write a note of apology to the caregiver that he kicked and hit. He said he wouldn't do this anymore.

Then on Wednesday was the real kicker. At school, they had a fire drill. Ds took off running.

The teacher never called me, which shocks me. I double checked, no missed calls on my phones.

I found out about this at about 5:30, when I was on my way to a dinner meeting with my boss and co-workers. Dh told me that the teacher sent home a two page note, explaining what happened.

According to the note, the teacher and the aide had been working with him, preparing him for the drill. They thought he was fine with it. But I guess he started acting out of sorts, not wanting to go to art. They told him it wasn't safe to stay in the room with no one there, so they finally coaxed him to art class. Then the fire drill went off after that. He was first in line leaving the building. He walked silently and quickly to the designated area, AND THEN JUST KEPT GOING. Ack! He took off and hid. The staff apparently saw where he went, though he was already hiding when the teacher came out of the building. He wouldn't come back in with the rest of the class. His aide, teacher and principal were all out there trying to coax him back into the building. They never got him back to art class, though he did return to his regular classroom, and finished out the day.

The teacher just wanted us to be aware of what happened. She was very concerned, since leaving the class is not safe.

I heard this all as I pulled into the restaurant parking lot, for that dinner meeting. I went in and told my co-workers what happened. They are fully aware of all the goings on at school, especially since they often have to cover for me so I can go to the school and get my son. One of my friends looked at me and asked, "Where was his aide? Isn't that what she's there for? As a one-on-one assistant, to help keep this sort of thing from happening?"

You know, that's a very good question. Where was the aide? I know the art teacher was in the back of the room, while my son was in the front. Considering that autistic children are notorious for getting upset about transitions and change, one would think that the aide should be on the ball, prepared for a possible negative reaction. Not only that, but ds is extremely sensitive to sound, so an excruciatingly loud fire alarm would be tortuous to him.

When dh spoke to our son, he discovered that the kids were pushing ds, shoving him from behind, in an effort to speed him along. All the handling was very upsetting to him, especially when he was trying to cope with the noise, the change, and everything else. That's why he took off. Again, one has to ask, where was the aide?

Does it surprise me that ds took off? Not particularly. Elopement is a classic autistic move. He wouldn't have done that with us, but I would have kept an eagle eye out for him. I probably would have instructed him to put earplugs in, and I wouldn't have left him unsupervised in the line.

Now maybe I didn't get all the details. Just because the aide wasn't mentioned in the letter from the teacher doesn't mean she couldn't have been right there by his side. Maybe she was right with him when he bolted. I don't know. It doesn't say that, though.

But the incident concerns me, too. I worry how safe he is there, considering what he gets into when no one is watching him. He's gotten hurt twice so far this semester (three weeks). A cut on his shoulder and a badly skinned hand and knee. He's taken off running during a fire drill. Gotta wonder just how well supervised he is.

I'm also concerned that they could get fed up, and kick him out. Or a "change of placement." Not that I'd be adverse to sending him to a different school. I just want it to be a positive change, not a change for the worse. Or maybe they'll just throw him out and say we can't handle him. Homeschool him.

Personally, I think I'd do a terrific job of teaching him, to be quite honest with you. At least for a couple years or so. However, I can't afford to do this. I have to work. So does dh. The only autism doctor that he goes to now is not covered by insurance. We receive no assistance at all now. Not from the government, not from Easter Seals.

I have to bring home a paycheck. And I have to have insurance. I can't stay home and educate my son. And I can't cut my hours to stop using daycare.

And speaking of daycare: If he gets thrown out of that, where will we go now?

Oh yeah. On Thursday (the day after the fire drill), I received an email from the special ed teacher on the IEP team. She wants to call an "informal IEP meeting." Oh joy. Just what do you suppose that's going to be about?

I'm so unhappy. I don't know why ds is acting up. And I don't know what to suggest to them. I went to those first IEP meetings with such excitement and hope, believing that they would truly help my son. But it gets so frustrating when the supports they describe don't really happen. Or when they turn this into a discipline issue.

Ds has been telling me that they don't show him his smiley face chart. They're supposed to show this to him several times a day. He says they only bring it out when he's angry. The chart is supposed to help him to recognize his moods, and how he escalates, and what he can do to calm himself. What good is it, if they don't utilize it?

And he has a one-on-one aide. But if she isn't there when he's most certainly going to go through something upsetting, then what's the point? And if he takes off, when she's busy helping the teacher or another student, then she isn't really being a one-on-one aide.

And he has an OT, but she doesn't believe he has sensory issues, in spite of the fact that he's been diagnosed by numerous specialists as having severe sensory issues. (She says this because her therapies seem ineffectual with him.) I guess she forgets that the first time she brought him into her sensory room, he pretty much velcroed himself to her equipment. She had never seen a kid respond like that. And I guess she doesn't believe us when we tell her that he can't eat anything even remotely hot, and he can't sleep in daylight, and even the soft department store musac is enough to give him migraine headaches...and on and on... She, too, believes his problems to be discipline related.

His speech therapist has been wonderful with him. She's been a real saving grace in all this. Her social stories are helpful, her way of communicating with him is calming... I can't say anything but wonderful things about her.

My son is not a discipline problem at home. He's not wild, violent or lazy. He works hard, and happily. He loves to learn. He's very bright.

This shouldn't be this hard.

New Autism Website

Just found new autism site: www.autismdiscrimination.com

Good quote

People are different. And it is the best way. – Mark Twain, Tom Sawyer

2nd Week

It's been an interesting week. Nathan got hurt at school, and then was sent home Tuesday.

I got a phone call that morning. It was Nathan. He told me he fell down and skinned his hands and knees. Sounds like the one hand was a lot worse than the rest. He was pretty upset about it, so they let him call me. I talked to him for a bit, and he calmed down. He just needed mom. :)

Later, he fell behind in class, and started to get frustrated and upset. They said he threw a small piece of cardboard on the floor, and crawled under a table. He did not hurt anybody. Sounds like it was a mini-melt, not a full blown meltdown.

They called Dh at work. I have no idea why they called him and not me. Dh was glad to leave work because it was ungodly hot, and there is no airconditioning where he works. But we were both a little perturbed that I wasn't called.

The school's explanation to Dh was that they didn't have my phone number. HUH?!? That's odd, considering they called me on my cell phone numerous times the previous week, AND called early Tuesday morning. But somehow my phone number is no longer on any records at the school. (Uh huh. Gimme a frickin' break. And all forms that have dh's number on them, also have mine, and mine is listed as the primary contact number.)

Do you know how many forms I had to fill out for that school, listing emergency numbers and who is allowed to pick him up, and all that? My number must be on file at least six different places there. Work, home and cell. Let alone the fact that they have had me on speed dial for the past four years. And come on! THEY CALLED ME THAT MORNING!

I was also irritated that they sent him home. For what? For crawling under a table? If they're going to send him home every time he does that, it's going to be a long semester.

Then Dh gets him home and Nathan starts right in on homework. He did homework for nearly three hours before I finally had to stop it. (He was getting really frustrated.) He hadn't been screwing around or dilly-dallying either. Hard work for three hours. That's a lot for him, and it had me really worried. I will not have him doing homework all night again, every night. When they've done that to him before, the meltdowns increased in number and in severity. That's just insane, to give that quantity of work to someone with autism.

I sent a note to the teacher, saying that he worked very hard, but he just couldn't do any more. It wasn't sent back home again the next day, and there was no response. I wonder what that means? Are they going to give him an F for the missing work? Or are they going to consider the homework assignment completed? I have no idea. Not much I can do about it. He just couldn't do any more. Oh, and I gave her my phone numbers, too.

The next couple days improved. He didn't have any more issues at school (that I know of). But Friday I received a call from the after-school caregivers. He got upset and went behind a door, and wouldn't come out. They considered this a safety issue, since there was stuff behind that door that he could get hurt on, if he messed around with it. I asked if I could talk to him, if he would take the phone.

I couldn't tell whether or not he had the phone. He wasn't talking. So I just kept rambling on about how I needed him to calm down, take deep breaths, and come on kiddo, talk to me. Finally I got a grunt. Progress. It didn't take long then, and I had him talking in one syllable answers. Then he got to short sentences. I talked him out from behind the door, and got him calmed down. He wouldn't tell me what happened. He couldn't communicate it. So I asked if some kid was giving him trouble. Yes. I told him to stick by the grown ups, and I would tell them that someone was giving him a hard time, and ask them to keep an eye out. Would that help? Yes. (Phew.) We talked a little longer and he gave the phone back to the caregiver.

She sounded relieved that I got him from behind the doors. (They divide the room in half, and there's a lot he can get into on the wrong side.) She knew what had happened with the other kid, and would keep an eye out for him. I told her she could call any time. But I also warned her that sometimes, if he's really upset and really angry, to be careful about giving him a phone because there is always the possibility that he could throw it. Hopefully, he won't get to that point.

The homework sent home during the rest of the week was minimal. That was good. Too much homework is definately a dangerous thing.

I did finally send the "Nathan Handbook" to the teacher. I hadn't finished going over it. The picture is still from last year, and it still had the note to the previous teacher in it. But I gave the new teacher a note and suggested that she read the first seven pages (about 15 minutes of reading), and hopefully this would give her some good info to help her right off the bat. Then I asked her to send the book back home with him this weekend, and I'd try to update it. I was thinking of adding a bit about perseveration, since that seems to be a real bone of contention with the school staff. Nathan tells me the teacher took the handbook home with her! Now that's more than his last teacher did. A very good sign. I hope the book helps.

And I almost forgot! Good news! He got another perfect score on his spelling test! I love seeing that. I just hope he doesn't expect that every time, because then he'll get upset when he doesn't get it. I try to tell him that it won't matter if he doesn't get 100%, that he tried very hard to do his best, and that's all we want, that the score doesn't matter. But I know how he gets with that perfectionism. I'll have to keep reminding him.

I've been taking him to the bus stop every morning in my car. I'd be thrilled to let him walk to the bus stop on his own, but I don't dare. There's still that one boy that beats up his sister on the stop, and when I'm not there, he goes after Nathan as well. So I don't give him the opportunity. His mother came with him and his sister on the first couple days. A lot of good that did. He went after his sister with his mother there, and the mom just got in between them, with the boy still swinging around her, trying to slug his sister. Good grief. This year, I'm keeping my camera in the car. Or my cell phone camera. If he's going to beat her up every morning again, I'll show the school exactly what's happening. I'm so tired of this. (On a good note, their house is up for sale!! YIPPEE!! I hope it sells soon.)

This has been a slightly rocky start to the new school year. Much better than last year at this time, though. But so far we've had two injuries (the shoulder cut and the skinned hands and knees), one melt in the classroom, one hide-behind-the-doors in afterschool care. The good things were that the new teacher seems very nice and kind, so that will be helpful for Nathan. And she actually made an effort to read the book, which is more than the previous teachers have done. So that's very good news. His bus driver is familiar with autism, and will be patient with him. And the bus stop bully may be moving - I'm keeping my fingers crossed. I guess at this point I'd say the first two weeks have been more good than bad. I hope the good will increase as Nathan gets used to the new routine, and knows what to expect. I sure hope so. And maybe, if they continue to resist restraining him, maybe he'll get to trust this staff. I sure hope so. I want to trust them, too.