Monday, September 30, 2013

A Good Fight

There is something to be said for arguments in this house... none of us can make it through an argument without laughing at some point. For an argument to come up and everyone make it through with a straight face is a rare thing. My brother has commented more than once, kicked back in his chair, smiling along, that he loves to watch us all fight.

Remember way back last week when I was upset at the realization of just how far behind Alex is? Yeah. well,

Saturday night was a rough night for sleeping. None of these little demons wanted to go to bed. We have a deal on non-school nights, as long as they stay in their beds, they can watch TV as late as they want. I don't care if they see the sun rise, I just want some sleep without the fight of making them sleep first. BUT, as soon as one of those little feet hit the floor, the deal (and the TV) is off and they are going to bed.

They are always in their rooms by 8pm, unless they just push me too far and then I thank God most of them can't tell time. Like Saturday. When they were in bed watching TV by 7. That girl. Uhg. By 8:30, the TV is off. 9:00, I unplugged it because she turned it back on. 9:30, she lost her babies. 10:15, I dragged every single toy out of that room and piled them in the kitchen floor. 11:00, she's still going strong and I'm arguing with the Goofy child.

Then comes midnight.

Alex has been vocal stimming and flapping his hands together for about 30 minutes and I've had it!

Me: Goodnight.
Alex: Goodbye, goodbye, goodbye?
Me: No, we're not going goodbye. Goodnight.
Alex: No want to. Goodbye, goodbye, goodbye?
Me: No. Goodnight.
Alex: No want to.
Me: It is bed time!
Alex: Goodbye, goodbye, goodbye?
Me: Boy, we are not going goodbye at midnight, get your ass in that bed and lay down!
Alex: no, no, no, no, NO.
Husband: *laughing* He no want to.
Me: *Walking away to the front porch to laugh without being seen*

Behind, my ass. That boy is perfect.

Saturday, September 28, 2013

Star Student

The Goofy child came running off the bus Thursday afternoon to tell me the exciting news that he had a green day. Woo. I sat on the porch to look through his backpack while I waited for Alex and I saw something that was exciting... Star Student for the week of September 30... *drum roll* ...GOOFY! *and the crowd goes wild*

Until the crowd reads #3.

"Parent letter: Parents, please write a letter to the class telling us how special your child is to you. ... you may want to choose from one of the following ideas:
*Describe special or funny stories about your child
*Tell us some neat things we may not know about your child
*Send in a silly or special picture with a letter describing the picture
*Write a short story with your child as the main character"

*cue panic*

She wants me to write something about my son!? For people to read!? It has to be funny or special!? omgomgomg, whatamIgoingtodo!? HELP! Somebody help me! I don't know what to do! *flurry of panicked curse words*

Then, out of the clear blue sky, something smacks me upside the head, "you dumbass, you're a blogger."

Haha, that was stupid.

Alright. I get my pen and paper and hop to it. Here ya go...

Hey children, come on in and have a seat. Let me tell you about a boy named Goofy.

Goofy is my special boy, my favorite son. (I say to you and then quickly whisper behind my hand to his 4 brothers that I am just joking, they are each my favorite.)

My favorite thing about Goofy is his wild imagination. He is amazingly creative.

Why, when he was just 3 years old, his best friend was a fly named Fido. (No one else could see Fido, but don't tell Goofy that, he might think he's crazy.) Fido was a naughty fly. Goofy was always arguing with him over the trouble he caused; breaking things and making messes. I think they argued more than they played.

One day, Fido ran away from home. Goofy was very sad so we made fliers like this
...




...but no one ever found him. We were sad. *cough* well, I wasn't. That fly was naughty.

Goofy loves animals, but they tend to get him into sticky situations like the time the hamster got lost in his pants and helped him make up a brand new dance that goes like- wiggle, wiggle, screech!!

Can you dance like that? It looked fun from where I was sitting but I didn't have a hamster in my pants.

Goofy has a hamster named Jason and a black cat named Gilbert. I think he loves black cats more than anything. Except zombies. He really loves zombies. If he could have a black zombie cat, I think he would be the happiest boy in the world.

Even happier than when his uncle takes him fishing, and that's a happy that is hard to beat.

Not that he actually likes fishing. He hooks himself more than he hooks the fish. He'd much rather go exploring places one shouldn't explore looking for things one shouldn't find like creepy crawlies or snakes.

Goofy finds snakes fascinating. I tell him curiosity killed the cat but then he wants to know which cat because he's a literal thinker.

That means that he hears words the way they are supposed to mean instead of what you want them to mean like the time I asked him to look for cooking oil under the microwave and he looked under the microwave instead of in the cabinet under the microwave.

Goofy loves to help cook, his favorite meal is macaroni and cheese with hotdogs. I swear, if he could eat it every day, he would. What is your favorite meal?

I think Goofy's favorite part of cooking is making the mess. He's very good at making messes. They are like works of art.

Which is another thing Goofy is good at- making art. He is always bringing me pretty pictures to hang up. He even puts my name on a lot of them- MOM.

He is really good at making me feel special.

What are some of your favorite things about Goofy?

Goofy, Love you, buddy. Behave. *heart* Mom.

Thursday, September 26, 2013

Alex's Curriculum Night

There will come a day that I will be able to leave Alex's school and not cry my way home. I have to believe that.

Unfortunately, that day is not today.

What I want from each school is different.

And yet, exactly the same.


I'm through with standing in line
To clubs I'll never get in
It's like the bottom of the ninth
And I'm never gonna win
This life hasn't turned out
Quite the way I want it to be...

I went to the Goofy Child's school, I went in knowing the image I want to present, knowing the image I need to combat. My child is the one that other parents go to the principal and ask for him to not be in their child's class next year. Well, one dad had good reason. My child and his child spend their time together plotting world domination and attempting incite riots and mutiny. Actually, I am currently considering whether or not I should request they not have recess together so we can stop getting think sheets for acts of terror on the playground.

So, I knew what I was up against going into my first PTA meeting. No problem. I dressed for confidence. This is where I figured out my mission for this school. I was listening to them discuss budget cuts and where they need more money, that they were short 2 smart boards. The smart board problem was temporarily fixed by taking a smart board out of the self contained classroom and putting it in a first grade (?) classroom. Not one person said a word about how wrong that is. One person did say, "So we're good on smart boards? We don't need anymore?" (the answer was we still need them) I'm looking around at the 15-20 (guestimate) men and women seated in the room wondering, where are the SN parents? Do none of these people have a special needs child? Is no one going to speak up? No one did. Not even me.

After the meeting, I told the president I want to help. I want to do something but I can't be there the night of the activities because I can't bring Alex with me. Later, I realized what I said, what happened, what was missing. Our kids don't have an advocate in that room. If Alex can't go, neither can the kids who were in his self contained classrooms. I want inclusion. I want them to know and to understand that our kids have just as much reason to be at these activities as their kids. It is our job as the adults, as the ones planning these activities, to make sure all kids are able to participate no matter what. Our kids are not less than and cannot be excluded, no matter how unintentional it is. I am determined.



I haven't been involved much in the middle school yet. I read e-mails, I follow them on Facebook and Twitter. I keep up as well as I can on what is going on in their school. I read the updates, I look at the pictures... and I wonder... where are our children? Yes, I am well aware that some disabilities are invisible disabilities, but not all of them. I see pictures of various classrooms and activities, I know they have resource rooms, they must have self contained classrooms... where are those kids? Someone needs to ask and so far, it doesn't look like anyone is. No matter how unintentional, our kids still seem to be left out. I would like to see more of an effort to recognize that our kids are worth noticing. They are not invisible.



Alex's school, the Special School, is easy. I just want to fit in. I want a place. a safe haven. Somewhere that we are normal, where I'm just plain Alex's mom and Alex is just plain Alex. You know?

It started out good. Well, it started weird. Ok, it started.

Walter was supposed to go with me. He changed his mind at the last minute. and I thank God that he did. I left a little early so I could get my usual parking spot on the side of the building because there are never any in the front, which is why Alex is always a few minutes late when I take him in (stupid buses blocking the way and the bus guy doesn't want you waiting in line because the line is only for buses), but I pulled into a mostly empty parking lot. I looked around and I'm thinking... Did I get the day wrong? The time? I think back to the e-mail and I'm almost sure I have the right day and time... but this really doesn't look right. Where are the parents? I go in and ask, I'm in the right place at the right time so I go sit down to work on the assignment that Goofy's teacher gave me (It's exciting, and there was a minor amount of stupidity involved, you will love it) until people decide to show up. They did. Just not as many as I expected. I think there were more staff than parents.

The principal and the Assistant principals give their speeches (the principal rocked it.) and the Assistant Principal introduced the staff. He told us their names and what they do but I got a little lost on what it all means or how these people would relate to Alex. I don't even know if that's the right word... I mean I don't know if they would have anything to do with Alex, if he would come in contact with them throughout the day, or what they would be doing. There were the obvious ones like SLPs and such but most of them, I just don't know. He introduced elementary staff and middle school staff and high school staff but I don't know what grades or ages each would apply to. Alex is in 6th grade. If he were in the regular schools, he would be middle school until 8th grade. But then high school is 9th-12th grades but the SSD keeps kids until 21. So, would the 12th grade through 21 be transition? What do they do in these levels?

To find out what goes on in our kids' classes, we break up into groups and go to the classrooms to see what they are learning.

Alex's teacher ended up with 2 classrooms. Unfortunately, they were 2 very different classrooms. and the other 5 from Alex's class must have had the good sense to stay home. It started with me and one set of other parents representing 2 kids. on completely different levels of functioning. As she was showing us her materials, I could tell that she was uncomfortable. She needed to explain to them why her materials looked like a 2 year old could ace them (The girl totally could, not even joking, and it's not because she's a baby Einstein) while their son apparently should be using way more advanced materials. She said, "I have the really low kids." She said it fast and low and I could tell she was uncomfortable saying it. Not as uncomfortable as a rusted knife straight through the heart, but obviously not pleasant. She was explaining the curriculum and the difference between what she was showing them and what their son would be using. The other parents asked her to please slow down because she was obviously uncomfortable enough to try to rush through everything... with good reason. My poker face sucks. I'm just glad they were nice enough to keep their eyes glued to the other parents and ignore the fact that my allergies had my eyes watering and itching like crazy.

So, she apologized for rushing. She slowed down and she started passing the folders with the pecs. Sorting and matching and spelling and... omg. Folder after folder after folder... of things I know without a doubt that Alex cannot do, not on the level they were talking about, not on the level of the materials she uses in class. After the one with sorting animal from plant, I  refused to take another folder. She has the really low kids. In a school of 200 kids... are these the 6 lowest functioning? She has 3rd and 6th grade... Please, God, tell me mine isn't the only 6th grader? and even then, the materials for her class... is he the lowest functioning in her class? If it hadn't been for the absolute certainty of public humiliation, I would have walked out right then. But, ever since I ran out of my English class in 10th grade and then embarrassed myself even more in the phone call to my mother in front of a silent study hall class of 50 students... yeah, I  try to avoid embarrassing myself in front of large groups of people. So I stayed.

I didn't learn anything new tonight. Nothing that will help me help Alex. Nothing that really pertains to Alex. I didn't even really learn what goes on in his classroom, not what he's learning, not what he can do.

Luckily, the other parents seemed oblivious, but the staff seemed to know exactly what was happening and tried to gloss over it with the worst possible thing they could have said... a version of "when you've met one kid with autism, you've met one kid with autism." easy to say when it's not your kid, and a bitter pill to swallow when it is. What happened tonight, the way it went, the things that were said... I don't blame the staff. They did nothing wrong, they said nothing wrong. There is not a thing I would have done differently standing in their shoes. Truth hurts. That's just the way it is.

Combining those 2 classrooms was a bad move. It took all of the attention off of the curriculum  and created a very uncomfortable situation that spotlighted the huge difference in ability. This was not a good night.

but I'm not ready to give up yet. There will come a day that I will be able to leave Alex's school and not cry my way home. I have to believe that.

Tuesday, September 24, 2013

Convincing Walter to join my cult.

Walter has decided to lock me out of his life. I am no longer allowed to know anything that does not happen at home. His life is ruined, it's all my fault, and he will never tell me another single thing. ever. Not that he actually said such a thing, he's just hiding from me and refusing to talk to me. and did say that he was not ever telling me anything else. I ask what I can know, what he is willing to tell me about, he says, "you can know what happens at home."

Don't worry, I have the perfect solution.

Homeschool.

He's old enough to teach himself, right? What could I possibly need to do? Nothing.

Walter's all for it so I let him know we'll start Monday. Friday's the end of the grading period, ya know. I need to find out if he's grounded for all of eternity before chaining him up in the basement. This period's grades make all the difference in whether he gets home cooked microwaved meals or dog food.

He's still ok with it.

It'll be me 'n' him.

Just the two of us.

The Dynamic Duo.

The modern day Pinky and the Brain.

...who, by the way, Walter doesn't know!!! What is wrong with this world that I can't say, "What are we doing tonight, Brain?" and any child wouldn't know the answer!?



Where were we?

Oh, yeah.

The two of us forever.

He was all into it until he found out we were starting our own cult. with no outside communication. ever. because the people outside don't understand us. They seek to destroy our way of life (well, the life we will have...) calling it "wrong" and "evil" and "abuse." We can't let them interfere with our God-given right... no! NO! ...our DUTY! to live in a way that we believe in our hearts to be right and wholesome. They just don't understand us. They hate what they don't know. We don't need no stinkin' outside people. We will cut ourselves off from everyone. and it will just be us and I can know everything that goes on in his life because I will be there to experience it.

I'm laying there in his bed with him, petting his hair, whispering a description of our eternity of togetherness when he says, "mom.... you scare me." "That's alright, baby. I scare myself."

The good news is, we are not homeschooling. That means I don't need to Google how to install heavy duty chains into the concrete basement floor or find out which dog food would have all the nutritional value a growing boy needs, Walter will get to keep his electronics and his precious 8 hours per day with hundreds of other wild beasts, and he won't have to find out first hand why a trapped animal will gnaw their own foot off to escape.

Unfortunately, it looks like my dreams of being a cult leader will never be realized. *sigh*

Monday, September 23, 2013

Good Times...

First of all, I have to take a moment to brag on my boy.

Yesterday I put the kids down for a nap... or in their rooms for quiet time so the ones who needed a nap could have one. Alex comes to his door and starts upset vocal stimming. I walk back there, "What's wrong, buddy?" He stops stimming and exaggerated sniffs at me. "Did you poop?" He starts laughing. Guess what. He pooped. BOOYAH! How's that for nonverbal!? Rock on, Alex.

So, anyway, the point in this post is this....

Meet Jason Freddykrueger Screamwoods.

video
 

We've been having a fun time. Such a fun time.

Jason has been spending quite a bit of time with me these past 14 hours. If he's not in my hand or in my pocket, he's roaming around whatever surface is handy and cat free. Let me tell you, trying to put clothes on a wiggly human while trying to confine a wiggly rodent to your hoody pocket for his own safety after rescuing him from being introduced to the turtle... not easy.

Apparently, changing owners makes it a whole new pet. and erases the horrific memory of the last time Jason the Hamster met Gilbert the Cat. And, the fact that Jason lives in the house makes him totally different from all of the dead rabbits, mice, squirrels, and unrecognizable body parts that show up on our front porch.


What the hell is that!?
DON'T LET IT TOUCH ME!

NO, JASON!!!!!

Alex is not quite as thrilled about Goofy's new pet. He likes him a lot better inside of a cage that he can throw. And not stealing his Fruit Loops. Jason is an addict. Watching him fill his little cheeks as fast as he can, frantically reaching down to grab more as you pull him away... I tell you, it's a pathetic sight. Alex has no sympathy, he glares at me as I grab just a few more to send back to his cage with him. Honey, he already touched them. You won't touch the animal but you want to eat what his dirty little paws pranced over? Really?

Yeah, this is going to be a ride to remember. I can see it coming.

Sunday, September 22, 2013

Alice? Or the Mad Hatter?

I have a bad attitude lately. I'm angry, I'm frustrated, I'm just fed up. I've thrown out the rose colored glasses and I have no interest in putting them back on. It shows in my writing and I feel bad that you all have to listen to it. I feel bad that the things taking up all of the space in my mind overshadow the wonderful moments. I want to share it all with you, I want you to see the hilariousness and the moments of absolute pride in my children. I want you to see as much, if not more, good than the bad. I want you to know life is good. That there are always beautiful moments even on the darkest days but I just can't seem to shake this dark cloud. It feels like I am turning into this bad person and I don't like the way it feels. I want out. I don't understand why I am so damned negative all the time. This isn't me. This isn't who I want to be. I decide I am going to stop it. Just stop, move on. and then something happens that reminds me why I'm here in the first place.

I'm used to self doubt. I'm used to questioning my sanity. Living in Wonderland and never knowing if I'm Alice or the Mad Hatter. I chalk it up to my own issues and question my mental health. I started Zoloft before school started but my anxiety went through the roof, to the point I was waking up with panic attacks. The start of school isn't a good time for that because anxiety is already high, so I stopped. I've been wondering if it's time to try it again, if all of these dark feeling are because I'm a mess, because there's something wrong with me. It never really occurred to me that there was a possibility that the problem wasn't me.

Until Alex's Mommy brought snacks for school last night.

Every time Mommy and Sister come visiting, I watch Sister toe-gallop her way where she's going, I watch her happy little flapping, her obsessions, I pay attention to her significant speech delay. I ask Mommy, as I always do, how Sister is doing and if she has thought any more about going back for evaluation. Come back in six months was up a year ago. Mommy, as she always does, looks down and says, "yeah, I've thought about it."

Except last night, Mommy doesn't go on to all of the other things (serious things) going on in their lives, she admits with shame that she doesn't know if the doctor will believe her. The school says she's fine. Everyone who talks to Sister gushes over how much better she's doing. They say she's making great progress- which she is. ...and Mommy questions her own sanity. She wonders if the problem is her. She sees what's going on with Sister clearly, but everyone else says she's fine. That it's behavior. That it's a discipline problem. That Mommy is a bad mommy. She worries that the doctor will see what the school says and say that there is nothing wrong with Sister, that she's fine, that the problem is Mommy.

She tells me what the school says about how great she is doing. I go in and get my Goofy One's take home folder. I bring out his work and ask her to tell me what it says. She picks out a word here and there but for the most part has no clue what it is.




 
I tell her that they tell me this is typical. They tell me he is fine. She looks at me with hope. Everyone thinks I am crazy, that I am looking for something that doesn't exist. I told her that he qualifies for supplemental reading services and still they tell me he's typical. I told her that the doctor will know the truth. He's not going to take the school's word over what he can see for himself.
 
I remind her that Sister is almost 5 years old and that at 3, TS has passed her in almost everything. Mommy is painfully aware of that- she watches. and she questions her own sanity because everyone tells her she is crazy. No. She may be making progress, but Sister is not fine. She is not typical. I told her to make the appointment and I would go with her. I told her if she doesn't agree with the doctor's decision that she can get a second opinion. I told her I will go with her anywhere she needs to go. She's feeling better, she's feeling less beat down and outnumbered. She's making the appointment.
 
Sometimes, when everyone is looking at you like you have lost your friggin mind... sometimes, when  the world feels upside down and you can't figure out which way to go, when you question everything you thought you knew... sometimes, the problem isn't you. Sometimes, the Mad Hatter isn't quite as out of touch with reality as you thought he was. That's something I needed to remember.

Saturday, September 21, 2013

How to NOT scratch my baby...

It seems like here lately, all I ever do is complain. But, damn! If people didn't give me so much ammunition... ya know? So, here we go again. I'll even put a twist on this one and add in some helpful hints at the end.

Friday, Alex came home with a scratch. and no explanation.

I understand that children are children, rough and tumble. and boys, especially, have a reputation for being rowdy. I understand things happen and it's hard to know exactly how they get their bumps and bruises... and scratches. I get it. It's hard. Not impossible, but difficult. However, a picture is worth a thousand words, right?




 
 
 
 
Call me crazy, but I want to know what the fuck happened to my baby's face. To not have an explanation for this is inexcusable.
 
Accidents happen, I know. It's not the first time Alex has been scratched, there have even been worse scratches like the time he was playing with his APE teacher and she reached out to grab him while they were running and gouged his face with her nail- she felt horrible and went to clip her nails, problem solved. Things happen, I get it. but to not know how? or even what was going on when it happened? No. This is on his face. To not even know what or when... how long are you going without looking him in the face? Unacceptable. 

It's totally possible that this one happened on the bus, I'm still waiting for a response to my e-mails (I don't expect one before Monday), the reason for the above paragraph is that this isn't the first time it's happened and I'm pretty sure he wouldn't have gotten a matching scratch on the inside of his thigh from the bus like the last face-scratch-of-unknown-origin he came home with. Yes, I have pics, no I'm not posting. Boy has to have some privacy, ya know, especially when it comes to the diaper area.

So, let's move on to how not to scratch my baby's face...

1. Clip your nails. Yes, I love pretty nails, too. Clip them anyway and add some color to spice it up.

2. Limit your rings to bands. You can put on the sparkles when you get home.

3. There's no need for clunky bracelets. Be pretty on your own time.

4. Put your watch in your pocket. Or invest in one that doesn't have sharp edges.

5. When you are working with him, throw your name tag over your shoulder so it's in the back or tuck it into your shirt while you are physically handling him.

6. Keep your eyes on what you are doing.

7. If none of this works and he still accidentally gets a mark- admit to it. Nothing is worse than the possibility of what could have happened and why no one is stepping forward.

Friday, September 20, 2013

Do NT parents have a right to complain?

"Does anyone else get annoyed when they hear parents of NT kids complain about how hard parenting is?"


I see this all the time. By "Neurotypical" here, I'm assuming they mean "not-autistic." I gotta tell you, no, it doesn't annoy me that NT parents complain. But seeing this sort of comment does. Do you have a "normal" kid? Have you ever lived with one day in and day out? had to deal with their crap? It's not easy. Not any easier than dealing with an autistic child's crap.

I hear all the time that if people could take our autistic kids for a day, they'd never ...whatever... again. Don't you think it's the same with the not-autistic ones? What makes you think parenting is so easy for them? ...even easy compared to how awful you have it?

Not-autistic parenting is hard, too. You can list all of the ways that parenting autistic kids is hard, I can even tell you some ways that my not-autistic kids are worse... but here's the thing...

This isn't a contest. Parenting is hard. period.

I have just as much right to complain about my not-autistic kids as I do my autistic kid.

Being an autism parent does not give me special rights. Equality is not about being better- or worse off- than the people you seek to be equal to.

You want to spread awareness. You want our children to be seen as equal. You want them to be accepted without question. You want people to see our children as no different than their children and to see us as their parenting equals. and yet... there's still a pissing contest about who has it harder.

What message do you think that is going to spread?

You walk around with your poor me attitude, your you don't get to whine because my kids are so much worse than your kids, and that is what people will see.

"Oh, those poor autism moms, let's feel sorry for them because autism is so bad. We shall call them Super Moms and tell them that God knew they were special."

"Special kids for special parents."

"Oh, honey, don't play with that autistic kid over there, that kid is worse than normal kids, his mama said so. Go find yourself a nice normal kid to play with."

And then you wonder why we get condolences with the announcement of a diagnosis. Why they look you in the eye and say, "I couldn't do it." You get mad at the comments that you have your hands full and they don't know how you do it, or get upset that your kids are not invited to parties. you don't understand why they think your kids are so bad.

You wonder why people suggest we euthanize our kids or demand that they be removed from "polite" society. You wonder why no matter how much we advocate, there is no acceptance. no equality. You wonder why no matter how hard we preach, our kids are seen as inferior, defective, and never, never looked at as just a normal kid who happens to have autism.

We are angry at the attitudes, angry at the way they see our children, angry with the way they treat our children- the hatred, the ignorance, the intolerance, the dirty looks and the cutting remarks... we are frustrated with the things people say and the things they do... all the while never seeing that what we say and do is a big part of the way others see autism.

We spread a message when we complain that someone else's complaint is invalid based only on the fact that our kids have autism, that because of our kids' autism our lives suck more than theirs, and that message is not a plea for the acceptance or equality our children deserve.

Thursday, September 19, 2013

"Alex, don't be rude."

The best thing happened the other day, you won't even believe it. I couldn't believe it!

I took Alex to school so I could talk to his principal about his bus harness. Sitting in the office, waiting our turn, his teacher comes in to stand with us.

Now, at that team meeting, she expressed some... discontent that Alex doesn't treat her like he does his aides. He laughs and plays with his aides, but he won't even smile at her. I'm thinking, dude, you're new. give it time.

oh, no. boy, was I ever wrong!

So, Alex's teacher walked in to stand with us and discuss things while waiting on the principal. As soon as she walked up, she greeted Alex. I swear, the look he gave her was a plain as day Go To Hell.

As far as I know, there is absolutely no reason for Alex to dislike his teacher. No, she's not mean. No, she's not abusing him- I check him over every day. True Story. Paranoid Mama. She's actually soft spoken and seems to be soft hearted.

Anyway, so, there is no known reason for Alex to not like her so the look he gives her is just flat out being rude because he feels like it. I'm in shock! I stare at him in disbelief, then bark out, "stop that."

He looks at me with a frown in his eyes considering whether it's worth continuing, I think. After a minute, he wipes the rudeness out of his eyes and looks at her with a grudging welcome. "Thank you."

I have never seen him be rude for the sake of being rude and I'm sorry, I know it's bad, but I just had to laugh. Just another preteen moment. Gotta love it.

Wednesday, September 18, 2013

Dirty Laundry and Missing Shoes

These boys... oh, Lord... these boys.

I don't even know.

Alex is a freaking angel boy when it comes to getting ready for school. He gets up, helps me dress him, eats his cereal, and waits for the bus with no problem.

While I was on my way to get Alex, I tossed the Goofy one his clothes. After dressing Alex, I went back and told the Goofy one to change his shirt, I put his socks on and instructed him to find his shoes.

I went to dress the girl and realized her socks were in the dryer. at 7:30. Getting her socks out of the dryer, I realized Walter overslept.

Finished with the girl, I went to put Alex's things outside and got a text from Walter, "OMG, I don't have any clean shirts." I text back, "wear a long sleeved t-shirt and wash your clothes tonight." He texts back, "I sleep in them, I don't have any clean." I drop my head, take a breath, put out my cigarette and go get one of his dad's shirts.

Alex wants to stand in the yard where the bus comes instead of sitting in his boring seat. We stand by the road, he watches traffic, rocking gently from side to side, and gives his mama some love.

Once Alex catches his bus, I come in to find the Goofy one still doesn't have shoes. I see Walter coming up the stairs in his shoes. I yell at him to take his medicine and make it quick or he will miss his bus, next thing I know, he has no shoes and can't find them. He wants his boots, not his shoes.

I'm "helping" the Goofy One look for his shoes, and by "helping," I mean doing it for him, and can't find the damned things anywhere. Not only can I not find his shoes, I can't find any shoes. Not t-shoes, not sandals, not swimming shoes... nothing but snow boots. He is not wearing snow boots.

Looking for shoes in the basement, I hear the bus stop and chatty children disappear. I look a little more and head upstairs frustrated. Walter comes walking in the door, heaving a sigh. "Missed your bus?" he nods. "You'll have to wait."

I find the Goofy Child's shoes out back, sitting in a puddle of mud, soaked from the rain and filthy. He's wearing snow boots.

Walter disappears. He texts me a few minutes later, "barely made it." I text back, "You better not be walking to school." "No, I caught the bus." Grounded. So effing grounded, you freaking little liar.

I put the Goofy One on the bus, ranting at the neighbor dad that I've had it! Freaking teenage boys thinking they are big and bad and can do whatever the hell they want, I am going to school! He's laughing because he knows. He raised boys of his own and the boy he has now is going through the same thing. I have to make a point with this one before things get out of hand. and after my dumb ass taught him to weigh the worth against the cost of breaking the rules, I have to make sure the cost outweighs the worth by a long shot.

Putting the Goofy One on the bus with his dirty face and snow boots, I realize I didn't give him his medicine.

Awesome.

Fine, just fine.

I pack my purse, put the girl's shoes back on, and go pee before we leave. Coming out of the bathroom, I step in a pile of Comet. Seriously!? It took me 30 seconds! and I didn't even know we had Comet! Whatever! I put the girl's shoes back on, again, and we head out the door.

I go straight for Walter's school in my "classic stay at home mom outfit," to quote a well dressed and always pretty stay at home mom, with my bleach stained shirt, mismatched capri pants, unshaved legs, and tossed up hair. I confiscate Walter's phone for the foreseeable future, give him his meds and a serious lecture where I explain to him that every day for the rest of this week, I will be walking to the bus stop with him. He'll be lucky if I don't hold his hand. and I let him know next time I have to come to school, I will be doing it in my pj's. between classes. On the way out, I loudly wish him a good day and declare my love for him. That's what he gets for not saying it back on the phone yesterday. and, checkmate.

I go to the Goofy One's school and wait for him in the nurse's office. He comes walking in in his dirty face and snow boots, takes his medicine with no problem. I tell him he has something on his face and get a wet paper towel to wipe it. He says, oh, that's probably lunch. No, baby, it's just a smear of parental failure.

Tuesday, September 17, 2013

Home

Today is Tuesday. I haven't written a word since Saturday so I think maybe I ought to make some kind of effort to entertain you before I forget how to write. The past several days are a jumble, I'm not really sure what happened.

Sunday, I was trying to work out my feelings on talking to my mother again. I'm still not sure what to think. I'm happy to have the chance at family but at the same time I wonder how wise this step is. We stopped talking for a reason. and the reason wasn't as reasonable or civilized as "stopped talking" implies. How long before the reason comes up again?

I have commitment issues. trust issues. serious ones. with good reason. If you look around my home, you won't see any of my pictures on the walls. The most permanent picture hanging I did was to tack a few of Alex that school sent home and one of our wedding day onto a bulletin board hanging by my work space. We've lived here for almost 6 years and it took 5 just to do that much because I was afraid to claim this as our home. As soon as you claim something, things happen and it's no longer yours to claim. Trying to force the issue, my husband found an old school picture of Alex's and hung it in our bedroom. It's still there. alone.

I have made more of an effort in the past year or so. I even made spaces that are mine. Last year, I started with the schools. making an effort to be... I don't know, I wouldn't call it "involved" but something like that. Maybe something on the lower end of the "involved" spectrum. like, from a distance. This year I started with PTAs and Curriculum nights. stuff like that. I decided this is home. Life is good. This is my happily ever after. I need to enjoy it instead of waiting for someone to rip it away. Monkey see, monkey do... my boys will follow.

Well, Walter. because this is the only life Goofy knows. He was raised with stability.

Over the weekend, talking with my mother, it started out exciting, I started out with big dreams and stars in my eyes. She would be my mom, and I would be her daughter. My boys would have a grandparent and things would be perfect from here on out. We would be a family, perfectly willing to accept and love each other unconditionally. Beautiful, warts and all.

I started with the determination that this relationship would be what I wanted it to be. When she left Saturday, I sprung a hug on her. Parents hug their children. That's the way it's supposed to be and that is the way it will be. If I can make the effort to push affection, affection will grow. After she left, Walter cracked a joke about the hug, not knowing it was a sensitive topic. I let him know that it wasn't funny. I explained to him that the only time in 32 years that my mother hugged me was an awkward hug when my grandpa died. I explained to him that that is exactly why he and his brothers get so very many hugs and kisses and I love yous. I know what it's like to not have them.

I decided that this time around, I would have the mother I never had. She would be my mom, and I would be her daughter.

and then I realized. I realized a lot. As much as I have changed over the past 5 years, she hasn't. These past 5 years, she hasn't missed me the way I missed her, she didn't feel the gaping hole in her life. She doesn't want to know me the way I want to know her. At first, that bothered me, a lot.

I wondered how this would work if nothing has changed. How we could have this loving relationship I envisioned when only one of us wanted it. I thought I could change our relationship. I thought time had changed us both and now that I understood what I didn't understand back then, maybe that would be the difference. I thought if I made the first move in everything from here on out, maybe I could lead the dance and we could have the relationship I wanted. If none of that is true, what has changed? Why would it work now when it has never worked before?

Because I have changed.

Because I see that accepting her as my mom and being her daughter means being perfectly willing to accept and love her unconditionally. Finding her beautiful, warts and all. This time around, I will have the mother I never had because I'm not the needy little girl I used to be. I can accept her as she is. Autism has given me the tools I need to understand that just because they don't say it or show it, doesn't mean they don't feel it.

As for how long before the reason comes up again? It doesn't even matter. My happiness is not dependent on someone else. I have the conviction and the courage to stand on my own now. My self-worth is not wrapped up in how someone else feels about me. I cannot force her to care for me, but I can love her without the relationship being on my terms. I can meet her in the middle and not be devastated if she doesn't want to walk that far. This is a two way street, I cannot expect to dictate the relationship, to force her into an uncomfortable role and for both of us to be happy with it. This is her relationship as much as it is mine. I understand that now.

I have faith that this time around, that will make all the difference.

We have a chance at a relationship, I need to enjoy it instead of waiting for it to crumble.

Over the weekend? My mom sent pictures from when the boys were little. Walter claimed 11 of them. ...and then hung them on his bedroom walls :)

Monkey see, monkey do... We are home. Life is good.

Saturday, September 14, 2013

A Special Visit...

I got the kick in the ass I needed to get my head on straight. Thursday night and Friday morning I was too deep in "that place" to actually process it but once I started getting ready, it gave me the push I needed to get out of there and move on.

Thursday night, while otherwise occupied, I got 3 messages. By the time I finished the conversation and kept it together long enough to get home before sitting in my car and crying my eyes out, I didn't bother to read them.

I wrote my post, I dried my tears, I checked my messages.

One of the messages was from an unnamed number. "hey, this is G." The fact that she gave me her name instead of her title tells you how far gone our relationship has been. I haven't spoken to her in 5 years.

She has some stuff for me and wants to come up Saturday afternoon. My brother talked to my husband and he said it was ok, she hoped it was ok with me... pfft, yeah!

It wasn't until I talked to my boys Friday, asking them to clean the yard and cut the grass that it really registered....

My mom is coming to visit.

*cue panic*

I cleaned the house.

....but then the neighbor's garage threw up all over my kitchen.

I sorted and put away and boxed up what was going where.

Saturday came and I'm looking at this mess all over the place and I'm all... OMG, MY MOM'S COMING! She can't see this! CLEAN!!! Everybody, get your butts in gear, Grandma's coming! THIS IS BIG! She must be impressed, she has to like us so she'll come back! MOVE IT!

They all acted like I'd lost my friggin' mind. as if I was not perfectly justified in my lunacy. It's not every day your mother comes visiting after a 5 year separation.

We took showers (yes, all of us.) and put pants on. (yes. all of us.) (real ones.) (like blue jeans.) so that we could at least look presentable and pretend that we (I) have our shit together and all shower on a regular basis instead of doing the sniff test, throwing on some extra deodorant and tossing the greasy rat's nest that we call our hair up into a pony tail or a big glob of a top knot depending on how bad it is just to pass as decent. (We're looking to make a good impression, man! Not shock her with the horrors that come with special needs parenting!)

...but then Alex took his pants off.

...and Goofy stripped down to shorts.

...and the girl pulled her hair down. She would have stripped if it hadn't been a onsie.

So, whatever, at least I'm dressed. I cleaned the house again.

...and then the toy box exploded.

By now, I decide just forget it! I don't even care, if this works out, she'll find out the truth anyway. I'll just make a fresh pot of coffee and she won't notice anything else. *decisive nod*

So, I ask my brother to let me know the precise moment I should start the coffee for it to be finished the split second she pulls in the driveway and practically stand there with my finger hovering over the button because this will totally ensure her deep admiration and everlasting affection. She will love me, damnit!!!

My brother texts that they are on their way, I press the power button and scream for everyone to man their stations! Walter- get your ass up here and greet your Grandma! Goofy! Watch the window so I don't look like I'm watching! Yell for me as soon as she pulls in! Alex, get over here and get your britches on, boy, Grandma don't need to see that! Girl, get. that. out. of. your. mouth. Goofy! Is she here yet!? What about now? Are you even watching?

She finally gets here and turns out, now that she's not working 3 jobs to support her children, she doesn't drink coffee the way she used to. Go figure. and, the mess didn't even matter because she made a bigger mess with the stuff she brought, lol.

and all of that freaking? not even necessary, she's been texting me all evening long.

Thursday, September 12, 2013

Possibilities

I wrote a post last year about grieving the possibilities. The danger that comes with getting your hopes too high, just to be ruthlessly crushed by reality. Grieving things that will never happen. Tonight, I was cut by the other edge of that wickedly sharp sword.

Transitioning to adulthood.

Vocational training programs.

I wanted so desperately to hear that this could be a possibility for Alex. I want to hear that there is a possibility that Alex can do a job he likes. I need to know that there is a possibility that he could have a life beyond the four walls of our home.

At the same time, I want to beg for mercy.

Please, don't tell me this. Don't tell me about the success stories. The low functioning kids who have gone on to do more than was ever expected. Don't tell me not to give up, to take it one day at a time, because no one knows what the future will bring. Don't tell me that he may be in this place now but by the time he's 15 or 18 or 20 he could be doing great things.

Don't tell me that someday he could write eloquent messages, or even use an ipad. Don't tell me that someday he could fill baggies and affix labels, don't tell me that someday he may be able to feed paper through a machine or work a shredder. Don't tell me that someday he could work in a workshop or a nursing home or hold simple conversations or go to the bathroom on his own.

Please, don't tell me to hope in the possibilities because the possibilities are a lie.

I would rather have no hope than false hope.

I would rather celebrate who his is today and what he has accomplished so far and be happy in what this day brings than to dare dream of tomorrow.

I just got here. I just learned to be ok with the here and now. Please, don't take that away from me by telling me that someday is possible.

12 hours of WTF Moments...

Walter came running up to me last night, all smiles, "Mom! MOM! You have to see this!" He shows me his text messages and she likes him back!!! Now, he's not just crushing, they are "dating." (yes, with the air quotes again.)

Me: Oh, yeah? What's her dad think of that?
Him: Her dad can't know.
Me: Why not?
Him: he'd be mad. No, not just mad, he's be p-i-s-s-e-d.
Me: Is that because you're a juvenile delinquent? because you spent time in the slammer?
Him: No. her dad likes me.
Me: Does he? hm. Then what's the point in having a "relationship" if it has to be a secret?
Him: It's forbidden, Mom. That makes it exciting.
Me: Oh, yeah? Tell that to Romeo and Juliette.
Him: ... ... ... didn't one of them die?
Me: *face/palm*

My boy is some girl's dirty little secret. and he couldn't be happier.

 
 
 


This morning, I go to wake Alex up and find this...




He hasn't slept in the floor in MONTHS! What's up with that?



Then, I'm sitting at the table out front with Alex, waiting for his bus. I look over to my left to check on the girl... she's got a piece of felt in her hand, painting the window with her snot. No pics. You're welcome.



Still sitting out front, We're watching traffic back up as far as the eye can see because we live a stone's throw away from an insanely busy intersection and it's been raining. Next thing I know, here comes Alex's bus passing by to circle around. It drives up on the line of traffic, pulls into the oncoming lane, drives up the oncoming lane to the oncoming middle lane (totally on the wrong side of the yellow line) and then drives all the way up the middle lane to the intersection. I look at Alex because someone had to have seen that, and Alex is sitting there watching traffic, munching on Apple Jacks, kicking his foot without a care in the world.



And that (hopefully) wraps up the WTF moments of the past 12 hours.

The End.

Wednesday, September 11, 2013

My First PTA Meeting

Last night was my first PTA meeting ever. I was excited! As soon as the girl went down for a nap, I let out a silent WHOOP! to go with my happy dance and ran for the bathroom.

I put on my fancy (enough) clothes, my fabulous boots, carefully applied my makeup, and even straightened my hair.


I'm going OUT!

My husband wasn't even home an hour before he was threatening our children's well being if I left them with him.

Aw, how cute.

...he actually thinks I care. That's sweet. Honey, I've been stuck in this house with those hooligans for 5 years now, I'm going out and partying hard! ...well, as hard as you can party at a PTA meeting. but it's a good bet that there will be no snot nosed, fit throwing little monsters there, that's good enough for me.

I refresh and put the finishing touches on and ask my husband if I look ok, if I look "motherly." He says while wiggling his eyebrows, "Oh, yeah. you look hot." *eye roll* forget it. not happening. So, I go find Walter.

Walter hates my clothes. like, in general. He wants me to start getting dressed every day. *sigh* anyway, I ask him what he thinks of my outfit and his eyes light up. I actually look like a mom! He loves the outfit. But then he tries to take my bracelets. I threaten to break his fingers if he does not get them off of my bracelets right this freaking second. He says, "But, Mom! That's the most embarrassing part of how you dress!!!" Sorry, but the bracelets are non-negotiable.

The bracelets on my right arm are a promise to my children. They gave them to me and I told them I would never take them off. It's been... 3 years? 4 years? A few have broken over time but I will not take them off. for anything. The blue bracelet on my left arm is an autism awareness bracelet that Alex's sister gave me last year and the green one is the one Goofy gave me after his character walk. They are as precious to me as the rings I wear on my left hand.

Walter backs off and says besides the bracelets, I look great. He's impressed.

My husband decided since he couldn't convince me to stay home, he was going to try to shove all of the evening jobs into the time I was home so I could help. Watching that man run around, wearing the scent of desperation... it's a beautiful thing :) (oh, shush, if he didn't give me so much crap I wouldn't be laughing so hard.)

The PTA meeting was great, I think I agreed to do something but I have no clue what is going on with it. Some kind of bowling thing. I've never even been bowling, what the hell was I thinking!? I did warn her that I'm clueless but you can't learn until you try, right? Close your eyes and jump.

My friend did have a great suggestion... a recon mission. We need to go bowling. *firm nod* Now, to convince my husband.

This morning, I'm wondering if last night was worth it. Damned heathens. When I got home last night, there was a party going in the small kids' room. The entire schedule was a mess, but whatever. Then the girl cried all night long. Just about every hour, she was waking up crying. Turns out, she caught Alex's cold from stealing his cup. and the Goofy one? Has to take his medicine at school because we're getting ours today so he's freaking wild this morning. Pestering and irritating. Alex seemed ok. He even gave me extra kisses (on his own, I didn't even ask) and hugged me tight when I pulled his pants up. Ok, maybe that's more "odd" than ok... Hopefully, they will adjust to me abandoning them a few nights per month.

Tuesday, September 10, 2013

Those Moments...

This story starts with the girl's tendency to mess with my stuff. I really shouldn't be surprised, she is her father's daughter and that boy put me through hell every chance he got :)

Somewhere between painting herself with my chap stick, ripping apart the seal of my travel coffee cup, and mixing my entire container of coffee with sippy cup drips of water and papaw's melted ice from the night before...

True story, I couldn't make this crap up.
she deleted all of my contacts, A-F, in my phone. Unfortunately, doctor starts with D.

Yesterday was Monday, that means Date Day with my husband. Him with his planning-challenged self gets us to the restaurant 20 minutes before they open.

Perfect! I have 20 minutes to use his phone to google the doctor's number and make an appointment for Alex.

...19 minutes later, I'm growling at the phone that I don't want to "call", I just want the effing number! 30 seconds after that, my husband is reading me the number as I re-program it into my phone and hit dial.

We're sitting at our table when the lady comes back on the line...

Remember our doctor moved to a new office? with new staff? and I hate new people? ok, carry on.

...I tell her I need to make an appointment for Alex.

Her: Ok, and what do you need an appointment for?

Me: For Alex.

Her: Ok, but what will he be seen for?

Me: Oh, his nose is running.

Her: *beat of confused silence* *hesitantly continues* Ok, and how old is he?

Me: 11.

Her: *more than a beat of silence* Um...

and this is where I realize that I just made a doctor's appointment for an 11 year old because he had a runny nose. I swear, this woman must be a saint or something the way she masterfully handled my complete bungling of the conversation. I can only imagine what was going through her head.

Once I explained non-verbal, severe autism, history of ear infections, etc, she was more than happy to make the appointment. Except, our doctor wasn't available. With the new staff and additional doctors, he also got a nurse practitioner. I don't like it, but whatever. Gotta do what you gotta do to get stuff done, right?

We get to the office and we're finally called back. One of the first places we always stop is the scale, and the question we get every time in this office is, "can he stand?" pfft, yeah, he can stand the hell out of some crap! "Yes." This one kind of freezes and gets this look. mhmm. ok.

(judge me, I don't even care, it was worth it!)

So, I help get his weight and height, and we continue on to the exam room where I let him go. He bounced, he stimmed, he squeaked, he climbed, he smacked the blinds around, and tried to run out the door. He threw his cup, he threw his toys, he repeatedly asked for goodbye. I constantly blocked and redirected but he was not happy and determined to let everyone know it.

And by the time we left, no one looked twice as we silently and calmly rolled out of the office.

Monday, September 9, 2013

My 2 cents on the comment section... Sleep Deprivation Diaries

People never cease to amaze me.

Sometimes, I really wish they would.

Courtney, over at Sleep Deprivation Diaries wrote a post called Yes, him and Yes, her too. A very good post describing her feelings on getting diagnosis #3. The comments are disabled now. with good reason.

Comments comparing Aaron to Issy and telling her she should be scared. Telling her she needs to do more to protect her other children.  Seriously, she is doing everything she can! She is utilizing the resources available to her and is searching out more. She has come so far in the past few months. What exactly do you expect her to do? Euthanize him?

Asking, isn't she worried that he will abuse them? Come on, have you read her blog? or are you just dropping in to kick someone while they are down? Again, what more can she do?

Is that what Issy's life and almost death at the hands of her mother means to you? Is that the message you choose to spread? Fear of our children? Exactly what resources do you think are out there to magically solve this issue?

One comment actually addresses what's written in the post... calling her irresponsible for having another child. Oh, I'm sorry, you are exactly right. Anyone who parents a child with autism should be sterilized as soon as they get the diagnosis. even though no one knows what causes autism. Too bad that wouldn't have helped Courtney considering she was already pregnant. Oh, duh. maybe she should have gotten an abortion.

My response to the comments isn't anywhere near as classy as Courtney accuses me of being. My answer is fuck you, and fuck you too.

Your comments tell me a lot about Courtney.

They tell me that no matter how many of you come to her blog and page leaving these irresponsible and utterly inexcusable comments, she keeps posting. She has courage. No matter how many of you come to her page and blog and scream at her that she isn't doing enough, she still keeps trying. She perseveres. No matter how many of you come to her page and blog and criticize her efforts, she still keeps sharing their story to help someone. She is strong.

Your comments tell me a lot about the autism community.

For every one of these comments, there are 10 encouraging her. Sharing their own experiences and telling her that they've been there, too. They offer hope and strength, and and the support of a community that understands.

Your comments tell me a lot about you.

You are ignorant. I mean that in the sense of you don't know your ass from a hole in the ground and maybe you ought to go out and learn a thing or two before opening your mouth. Even if your mama hadn't taught you any better, you should have learned by now. Go get yourself some manners and stay off of the comment section until you do.

Sunday, September 8, 2013

The Goofy Child's Doctor Visit

The weekdays were just overflowing so I'm playing catch up this weekend. Wednesday was a rough day for me. The Goofy Child, he just goes with the flow, nothing really phases him for more than a few minutes. The blessings of young ADHD :)

I took the Goof to the doctor to get referrals for evaluation to take to school to request evaluation for SSD services. One of the things I'm looking at is CAPD. Last year we went to an audiologist for evaluation and were told that autism had to be ruled out first and he had to be 7 to be evaluated.

The doctor told me over the summer to get the reading screening through school and we'd see where to go from there. He said we also needed to make sure that the trouble was not the focus part of ADHD.

Autism was ruled out, he turned 7, we have the report, it's not the ADHD. I want to know where to go from here.

He says he doesn't think there's much point in evaluating for Auditory Processing Disorder because there are no sure tests and no proven treatment but, he can send us to a Speech and Language Pathologist for a speech eval. *suspicious glare*, last year it was an audiologist. He says looking at this report, it looks like speech to him. Alright, fine. I'll take it. At least it's something. It could either find something or rule something out.

Then he says that the Goofy One can't be evaluated for dyslexia until he's 8. Now, as much as I adore this man, listening to him speak those words, I don't know if I want to hit him or burst into tears. both seem like viable options. They can evaluate for dyslexia in kindergarten. True story. I read it on the internet. And, I swear to God, the next person who lectures me on writing backward... just read this. and this. I'm not just worried about the backward writing! Freakin' preach about early intervention and then constantly with the "wait", GAH!  anyway,

So there I am rambling on about what I need and why when he looks at me with this sad sort of look and says, Listen, this is what I want you to do...

UMSL does psychological evaluations. They have a Diagnostic Clarification Evaluations and Learning Disability Assessments. It's an all day evaluation or they might break it down into segments depending on the Goofy One but it will tell the doctor what he needs and tell the school what he needs. The best part? The evaluation is free if you live in St Louis County.

The Goofy Child's appointment is November 11.

Saturday, September 7, 2013

Alex's Team Meeting

You know those mornings where you just feel like crap? Like a hangover without the fun that leads up to it? Yeah, that was me Wednesday morning. I overslept, again, and skipped the showers in favor of helping the Goofy Child with the last problem that he was "too tired" to do Tuesday night... which I figured out was code for "word problem." and omg, something along the lines of,

blahblahblah 3 balls. blahblahblah 2 balls. There are 5 balls altogether. What is the question?

You can imagine. so I'll keep my dirty words to myself.

We finally finish the homework (not correctly, but completed just the same) and attach my little love note sharing our joy in the journey to not figuring out what the question was and head to the bus stop. The neighbor girl has been riding the bus this year so I've been chatting with the neighbor dad in the mornings. I like chatting with the neighbor dad. This morning, we get caught up in our chatting at the front door, leaving the girl to her own devices. and someone left the bathroom door open. where she found the diaper rash ointment.

So, we're headed out the door, her freshly washed in a new outfit and me strutting my just rolled out of bed look with last night's makeup and the clothes I slept in, wearing my I don't give a fuck, wondering just what's next. This team meeting is going to be epic, I can just see it coming.

Now, I've mentioned- briefly- my objection to being left out of the loop on a major decision, and this is what happened... Staff change.

I've mentioned a time or two just what I think of staff change, I could direct you to at least 4 posts right of the top of my head but the two most recent ones resulted in a public apology so it may be best to leave those buried in the archives. The good news is the teacher agrees with me that staff change is just too hard on Alex and has a *wonderful* solution. Instead of rotating 3 aides throughout the week, he will alternate 2 aides on the same days every week.

Yay, right?

Yeah, you'd think.

He's definitely keeping his aide from last year but she's going to scratch 2 and 3, who have been working with him for the past 3 weeks, and bring in a brand spankin' new aide to be last year's aide's alternate. AND, The new aide will be the main one, having 3 days per week while last year's aide has him on Tuesdays and Thursdays.

Alex and mama both threw a fit.

Alex more than doubled his dropping, added in eloping, and I wrote an e-mail of legit questions carefully crafted in a you're a fucking dumbass tone. She e-mailed me back a list of #4's qualifications as the reason for switching them out, told me how she trained with last year's aide specifically on Alex, and explained how they would be tracking behaviors in relation to new staff so we're cool. I think. Since that e-mail a week ago, every paper brought home lists last year's aide as being the one to work with him. I'm not sure what's up with that, if it continues next week, I'm so asking.

At the meeting, she showed me a chart on Alex's behaviors with 1, 2, and 3 with #2 having the highest rate of dropping and last year's aide having the least. She said the eloping was a one time thing (so far, *knock on wood*) and was easily fixed by shutting the door. (motor planning)

and then I found out I'm a dumbass. I'm counting the things he's doing at home as already mastered but instead of working on new or past words and phrases to build on his already unsteady vocabulary, we should be working on getting him to use his current words and phrases with more than just me so the new list for speech is simple: want it, don't want it, all gone, all done, yeah and no.

...oh, wait. Did I mention he has a new speech therapist? Yeah. but I like this one (so far). and I found out that he got a new music therapist last year. A music therapist who was floored when Alex walked into his room this year comfortable enough to utter a word or two. "He talks!?" haha, only when he knows you. *Shaking My Head* staff change. whatever. they'll figure it out sooner or later. baby steps. We still have last year's aide, that's good enough for now.

Friday, September 6, 2013

There's a boy I know...


 
I freaking love this kid.
 
Now that he doesn't have to help me read, he insists on doing his homework after supper. It helps a lot that the homework is math. So, last night, we're doing homework. He searched this house top to bottom for a red and yellow crayon because it had to be red and yellow like the other ones. Top to bottom. That boy was not giving up.
 
He finally finds them and goes on with his homework. He shows me this...
 
 
I looked. and looked again. I said, Buddy,
1,2,3,4,5... 1,2,3,4,5... 5+5=10.
1,2,3,4,5... 1,2,3,4,5... 5+5=10.
It's the same."
 
He gives me this look...


 
and says, "but different."
 
well, ok.

Thursday, September 5, 2013

One of our own...

"They are going to vilify her.

I would have vilified her.

In the same way I vilified the mother of Alex Spourdalakis just a couple of months ago."

Yes. Those were my first thoughts on reading an article and hearing bloggers talk about how sad, how tragic, how heartbreaking. That they just spoke to her this day or that day. What a wonderful mother she was, how strong, a great advocate. She's someone they respected. someone they knew. she was their friend. I read the comments and I'm flabbergasted. And I wonder what is the difference between this blogger and Dorothy? What is the difference between Issy and Alex? Is there a difference?

(This mother, whether one of our own or not, tried to kill her daughter just the same as Dorothy killed her son. That is not ok. It's never ok. murder is murder, never excusable. but I don't want to talk about that right now, I already said what I had to say.)

The only difference between this blogger and Dorothy is we can read along with the blogger's story, interact with her, and feel that we know her. Through sharing her life, she becomes a friend. She's not just a cause anymore, she's a real person. and a real person tried to kill herself and her daughter... It touches us on a personal level.

The fact that this one's a blogger makes the attempted murder either more despicable or more tragic depending on who you talk to. For me, I think it makes it more horrifying. Not because she's some "super celebrity" who should be held to a higher standard or because she was "One of the strong ones", but because as bloggers, we get and give a lot more support than you do. I can say that with the utmost certainty because I know the big difference between my personal profile and my page... and that's not just because I don't really use my personal profile, I hear the same stories from you. Outside of the autism community, the support just isn't there. ...and most of that community is online. The online autism community is centered around blogs and pages, groups, etc. I hear that this person with (relatively) massive amounts of emotional support gets to this place and I worry.

Some people are sharing phone numbers, asking you to call us, call a doctor, call the police, for the love of God, call somebody if you need support. To let you know that we are here if you need to talk. I'm not going to do that. I didn't even give my phone number to the PTO.

I will tell you that I am here if you need to talk. You can private message me on my page, you can e-mail me at mac.cowin@yahoo.com. I don't have all of the answers, I can't fix your life, but I can listen.

Wednesday, September 4, 2013

Walter's Curriculum Night/Open House

I so needed this night, you don't even know! That girl, Good Lord... that's all I've got, a plea for mercy. All you mamas and papas of toddlers... RESPECT. serious.

Anyway, by the time 6 pm rolls around, I'm happy dancing out the door with Walter. This whole dump the heathens on an unsuspecting victim for an evening out, it's so working for me. I like it. While I was gone, my husband fed the little vultures, helped the Goofy One with his homework except for the last problem because by then he was just too tired to do it, and put them all to bed before I got home. I love that man. and, oh, the stories he has to tell now, lol. I love it.

Ok, enough of the bragging and smirking, let's get on with the good stuff.

We pulled up to the school and found a great parking spot, *woot* for the rush to abandon my children getting us there 30 minutes early :) Walking up to the doors, I'm getting nervous. breathing. (think The Little Engine That Could) We start through the doors and seeing people, I mutter to Walter, "Duck and run,"  then proceed to put my head down and bolt for the gym. Out of the danger zone, I glance around and find my kid 10 steps behind me looking bemused. "What, you thought I was joking?" He laughed, we walked on.

We get settled into seats about 5 rows up with no one close to us, totally alone. Remember how well that worked out at the band concert? Yeah, same thing. It wasn't long before we were surrounded with touchy, talky people. We're sitting there talking about the new bleachers being disability-friendly and whether or not we could get Alex up them when Walter says, "Hey, Mom. Look." Stupid me, I ask what I'm looking at and look before it registers that I'm looking at Walter's friend's Dad. *eye contact* I mumble a quick, "you suck," as the friend's dad walks up to sit beside us. Walter laughs. (is there an age limit on putting you children up for adoption? just wondering.) I haven't had much opportunity to talk to this man, his wife is usually the one that calls me, tonight I find out I like him. He's nice. and he's quiet. I think he was just as uncomfortable being there as I was and wanted a familiar face. (Walter's)

Walter has a lot of great classes this year, classes I really hope he likes. His teachers mostly seem nice and he has one that I am half in love with. Language. Oh, what I wouldn't do to get my hands on one of his books. We have this one book we ordered so that I could help the kids with their homework.. well, 2, math and english... but he says they are learning a lot of things including writing a 13 paragraph essay! I really could have used that when Easy To Love But Hard To Raise asked me to write 5,000 words on raising children with an invisible disability. Anyway, one of his teachers, math, was talking about high school and things that didn't make any sense until I realized that these parents have serious goals for their kids. Like, college and stuff.

That's a reality check I could have done without. It's no secret that I'm a high school drop out. Not something I'm proud of, but known just the same. My highest goals for my boys are for them to not require rehab, avoid teenage pregnancy, and graduate from high school (strike 1 and 2 on that), Walter's friend's dad is /this/ close to having an aneurysm over his boy not making honor roll last semester and here I am hoping and praying for a C average. #AwesomeParenting

Moving on, Band. There are several activities she has scheduled for this year that we can probably take Alex to. He's doing so much better going places and being calm, he even sat quietly at Goofy's desk during his Open House without screaming or bolting. And, with his stroller, I bet we can even go to the Thanksgiving parade!  Exciting.

After meeting the teachers, there was a PTO meeting in the gym. Remember I want to do things this year? I went. and I'll go again. Unfortunately, this meeting started with spotting the lady who lives 2 houses down. The one that strongly dislikes me and is all too willing to acknowledge that my children were spawned in hell by the devil himself.    ...as if that was ever a secret. and, not only is she at the meeting, she's a member. because...of course. *shrugs*, whatever. she can give me an appalled stare across the table just the same as she can from across the neighbor's yard.

The best part, the principal is positive that they can find something for me to do "behind the scenes." I'm supposed to talk to the president. ...soon.

One more curriculum night to go.

Monday, September 2, 2013

Daily Notes

According to some of my fellow bloggers, I seem to be the only one talking about communication logs at the moment so some questions were directed my way.

Communication has been a continuing issue throughout all of Alex's school years. Not getting enough information, the right information, or any information at all. This is a problem for me because 1. I'm a control freak. 2. Alex is nonverbal. 3. I can't take him to school. So when do you talk to the teacher and how do you get the information you need?

Right now is actually the perfect time for me to talk about this because Alex's teacher is a frickin rock star. This year he has the best communication log I have ever seen.



I'll ask her if I can get a blank copy to post for you.
 
But let's back up to the when and how...
 
Alex's communication binder is a book full of  daily notes.
 
One at the regular elementary used just a plain spiral notebook where we jotted a few sentences back and forth whenever we felt the need. I liked this because it was an open line of communication. I did not like this because it was only random information and didn't happen every day. Another at the same school used a folder with daily sheets.
 
The special school uses 1" binders that stay in his backpack. Last year, it was a dry erase page that gave him the option of helping fill it out by hand over hand circling his activities from the day. That may have been good for the classroom, but it was not good for me. While cheap and environmentally friendly, there was no record for me to look back over to track whatever needs tracking (with Alex, it's mainly behavior.)
 
This year, as you can see, it's full of anything I could ever ask for. Every section has a purpose, and they use the space available to tell me more than yes, he had OT today, or Alex had a good day. There are actual things here I can talk to him about. It doesn't matter how much we love our kids, how absolutely perfect they are, we all have those times where we wish so hard for just a few minutes of "normal," having this chance to talk to your child about his school day handed to you is a priceless gift.
 
Alex is nonverbal, he doesn't actually talk back about his day. There are times where he will nod yes or tell me no or start laughing about something I mention, there are times he will give me a dirty look or a bored look about what I say but he doesn't talk. Being able to talk over things helps him because as much as hearing fluent and expressive reading expands your vocabulary, helps build your stamina, and make you a better reader; listening to someone talk does the same. Alex doesn't speak but he understands me just fine and he gets excited when I say something about what happened in his life.
 
This year's binder is 100% the teacher. She's awesome, I can't take any credit for that. I can tell you what I did in the past. probably not going to be a popular opinion and considering I have teachers, therapists, etc. on my page, I hesitated to write this... so, to all of those people-  I'm sorry! If you have any better suggestions, please leave a comment. serious. suggestions, please.
 
E-mail. You might be able to get it  through the staff directory on their website, or you can call the office and ask for it. Make a list of what information you would like in your daily notes and e-mail it to the teacher- asking nicely. ...the first time. The second time, you can be more direct in what you want and why- and don't let them tell you it isn't necessary or that they aren't there for your convenience, if you need the information, you need the information and that's that. After that, I'm impatient so I end up in the principal's office pretty quick. Again, ask nicely the first time. Then I move on to pestering. Every day that you don't get the information you need, send an e-mail asking the exact same questions  every time (the ones you asked for), and be sure to cc the principal. CC, not BCC. BCC is just underhanded and ...dishonest. Anyway, eventually someone will give in. If it's you, you suck at this game ;)
 
Most important, I think, make sure it's in the IEP.