Wednesday, October 30, 2013

Alex's Hat

This story starts 2 years ago with...
 
Once upon a time, we were trying to brush Alex's teeth without a full body wrap and a headlock.
 
His Occupational Therapist worked long and hard to desensitize him to vibration. She started with using a vibrating toy on his hands until he accepted it and then moved inch by inch up his arms to his head. The goal was to reach his face and, eventually, get into his mouth.
 
Until the day his Occupational Therapist was kidnapped by the Wicked Warlock of the Special School (just kidding, he's sweet. and I don't even know why she disappeared or who's to blame.) and replaced with ... let's just leave that alone. but, it was continued at home.
 
After a while, hair cuts became just a little bit easier. ...as long as you stay away from his ears and face because we haven't gotten that far yet. although, he is chewing on toothbrushes. sort of. We're still at the full body wrap/headlock phase of tooth brushing right now.
 
Alex has a thing with hoods, which always makes me sigh. He does not want anything but my hand  on his head no matter how cold it is.
 
...until a few weeks ago, when this happened...
 
 
 
 
True story. I have pics to prove it. I took TONS. because it was HUGE.
 
(Ignore the look on his face. He loves to give me dirty looks. I blame his age ;) ) 
 
But then, this morning, something happened that was even BIGGER.
 
LOOK!
 
 


Yes, that is a real hat actually sitting on his head without being yanked off and thrown. and it wasn't just for a few seconds, he wore it onto the bus!

HELL YEAH! *WOOT*

Now to get him to let people touch his skin again... *sigh*

Tuesday, October 29, 2013

That was scary.


Yup. One of those moments, I'm happy to say.

*whew*

Remember yesterday when I was very worried about what was going on with Alex's IEP stuff? Yeah. Longest day of my freaking life. We finally got it cleared up, though. We're following the timeline for evaluation-

The prescription for physical therapy evaluation was the initial request for evaluation. They have 30 days to decide if there is a need for evaluation.

After that meeting, they have 60 days to determine eligibility.

If he is found to be eligible, they have 30 days to write the new IEP.

and then they have 10 days to put the IEP to use.

(I would like to note again that 30+60+30= 120. it's a 120 day timeline. I'm not freaking crazy. well...whatever.)

His teacher says that it won't take that long, but with this school, I'm not worried about the time as much as I am the process. I'm worried about my role and what will happen at which meeting. Knowing what to expect takes a lot of the pressure off and reassures me that they are following some set of rules and knowing the rules we are playing by puts me at ease because I don't have to guess at what is coming or exactly at which point they are going to rip the chair out from behind me.

I know I've said I have trust issues, but those trust issues were earned. This school is a good school but that doesn't change the fact that when I'm tapped on the right shoulder, I'm automatically going to look to my left.

That's also not going to stop me from hoping for the moon ;)

Monday, October 28, 2013

Getting ready for Alex's IEP meeting next week...

I'm trying new things this year with Alex. In arguing for the Goofy One, I keep finding more and more things that I can get that will help me be a better advocate for my kids, or to at least fully understand what is going on in their IEP meetings.

Last year, I found out that I can get copies of things to look over BEFORE the meetings so I can be prepared for what's coming and have my questions ready. I tried it last year with Goofy, was told no, and accepted the no because, come on, it's *just* an eligibility meeting. Not like it's *really* important or anything. They're just telling me what they found... and denying him an IEP. Yeah, that little lapse in judgment came back to kick me in the face hard.

It's hard for me to transfer what I know from the Goofy One to what I can do with Alex because it's two entirely different situations. With Alex's school, I haven't even tried fighting because I don't need to. Since I don't need to fight, I haven't put much effort into exercising my rights. If they know what they're doing and are all cool and everything, why do I need to be all informed and crap? right? So, eh, whatever.

This year, I decided to get up off my ass and actually participate. Well, last year I participated by telling them what I want and how they could work it in because they keep trying to take bilateral integration away. and this year I gave her my list from last year with a few edits. but, I mean to actually take part in making the plan. and, if I have the a copy of the draft IEP and a copy of the physical therapy evaluation report, I can note my questions ahead of time, plan my arguments, and know the results so I'm not blindsided by a fricking freight train coming out of nowhere.

Along those lines... the fricking freight train... I'm just going to expect a big, decisive "No." to all of it. I don't like hearing no. Not to things I actually care about like bilateral integration and physical therapy, so I'm plotting. I send off my asking-nicely e-mail asking for a copy of the IEP and the physical therapy report to review before the meeting then go take a bath and plan my argument on where they can stick their "can't" and why they "must." I get out of the tub, eventually check my e-mail and get a nice surprise.

The first part was a complete shock- Yes. Yes, she would send me a copy of the draft IEP as soon as she is finished with it. and just as shocking, she plans on being finished with it a full week before the IEP meeting! at the most, I was expecting 12 hours! That is awesome.

The second part infuriated me. until I went back and re-read it, lol. Last year, Goofy's Occupational Therapist told me, pretty much, that she couldn't send me the report before the meeting because it wouldn't be done. Their inability to manage their time wisely isn't my problem. My kids best interests are my problem. So when I read that I couldn't get the physical therapy report before this meeting, I was pissed and getting ready to throw a fit. I went back to read it again before responding, thank God. I can't get a copy of the report before the meeting because there will be no report before the meeting. It has to be documented as part of the IEP meeting that there is a need for evaluation, then he will be evaluated, then it will be put in his IEP.

This is not making much sense to me. at all. Instead of an addendum to add physical therapy, they want a full new IEP, which is fine (I hope), I'm eager to see what this new teacher will come up with. but now, we need to have an IEP meeting to assert a need for evaluation...? Then what is the prescription from his pediatrician? what happens after that? When do they decide if he's eligible for services? When do they decide how many minutes he gets? Does there need to be a new IEP meeting to determine how his need for physical therapy is addressed? What is my part in this? What if I disagree with the evaluation results? What if I disagree with how they choose to implement services? Even though I've never been in this situation before, getting services with an IEP already in place, none of it sounds right.

and it's not looking good. My heart is sinking and I wonder if I need to be ready for a fight even though they seemed so willing when physical therapy was mentioned.

One of my favorite friends recently gave me a song...

 
"I finally kept my pride
And hailed a cab
Those cuttin words you said
Were the last stab
There’ll be no tears this time
They’ve all dried up
No more sweet poison
I already drank that cup
This tunnel’s dark
But there’s a little light glowing
Just enough for me to run toward knowing

Nothing in this world will ever break my heart again..."

It's ok, because I'll be ready. When they tell me no, I will know what to do. How to get there? Where to find the information? I'm not sure, yet. but I'm determined.

I will not cry at or after this meeting because there will be no surprises.

I will not blindly trust the implied sweet promises of hope from friendly people.

I will go in fully prepared, with my eyes wide open, expecting reality and hoping for the moon.

 


Sunday, October 27, 2013

Alex's Sister Trouble.

Alex loves his brothers. His brothers can do no wrong. He loves when his brothers hang out in his room with him.

He adores his niece. She is just too adorable to object to. even when she eats his Fruit Loops or sits in his spot on the bunk bed stairs, watching his channel.

His sister, on the other hand... that girl pisses him off.

 
Last night, his mommy and sister came visiting. The kids were running around doing whatever, everyone happy to be crazy. Alex sat at the table with his mama and his mommy, enjoying the company, chatting and chattering.

Until he went to check on his bedroom to make sure it was still safe and came back angry, ranting about *jibber jabber* and "MAD.  MAD. MAD." and "NOW." and "don't want it." and I couldn't understand hardly anything he was saying but I totally understood that he was MAD.

We tried for several minutes to offer him everything we could think of, trying to figure out exactly why he was mad.... until his mommy asked if he was mad that his sister was in his room. That's when Alex started trying to yank her out of her seat to go to his room and get that sister out of there and when she looked at me for help, he came to me, pulling and yelling and insisting I do something about it.

I'm sorry, but I had to laugh. Sibling issues are just so typical ;)


Alex's mommy's feelings are hurt that Alex so severely dislikes his sister but she wasn't around when my sister resented the hell out of my baby sister for being born or Thing1's violent objection to my boys being in his house or the trouble I'm having now with Goofy and the girl. Then there are the normal fights between Thing1 and Thing2, then Things 1&2 and Walter. Then Thing2 & Walter and Goofy and now Walter & Goofy and the girl. The younger sibling, more times than not, is a pest. and less times than would be average, is considered an intruder. someone who is invading their life and taking over everything that was rightfully theirs. Alex's sister is an intruder. a thief. She stole his other set of parents and the life he had with them and now... she's in. his. bedroom.  with his things! and she's touching them. He is MAD.

I understand his feelings and I do want to respect his wishes and his space but I found with my own siblings and Alex's brothers that any amount of defending or validating the feelings translates to encouraging the behavior and the feelings of resentment. I can't do that. Eventually, he's going to have to accept that his sister is his sister. for better or worse, the sister is here to stay and he's just going to have to get used to it.


The reasons for Alex's feelings are perfectly legitimate but it's not his sister's fault, it's their father's.

I'm not sure I handled it "correctly" but I handled it the way I do his brothers. I told him to knock his shit off, the sister was FINE. If everyone else can be in his room, so can she. and then I told him to get over it and go watch TV somewhere else. and then I prayed he wouldn't paint every single one of his toys like he did when she touched them last Christmas.

Saturday, October 26, 2013

Updates: Reading/Writing/Bad Kids

Things have been a little wild since the start of the year. So many things going, I just don't know where to start and then by the time I figure one out, we've moved on to a new problem before I even get to tell you what happened. Today, I want to tell you about a few of them.
 
First is the Goofy Child's writing. Where do I even start? We (by "we" I mean that effing man I married) made a goal to practice writing every night to reach the goals that me 'n' the Goofy One made at school to consistently ground his letters and to use capitalization and punctuation. His teacher sent home a whole folder full of paper for him to practice on. Remember his freak out that came with the request for him to copy a few sentences? Yeah. But then, remember my freak out about not knowing how to practice spelling words? Yeah! The Goofy Child is now copying each spelling word one time. With no complaint. The letters aren't grounded in the least little bit and they are still mostly illegible BUT he's writing them. This week, that's all I care about. We'll work on improving next week.
 
Second is the Goofy One's reading. His teacher sent home a stack of printed level aa and A books for Goofy to practice reading. He reads one to one of us each night and then I read him a book. When we went to the library... Monday? we picked out 10 non-fiction books. He hasn't once complained about the book I'm reading being boring or stupid. *woot*
 
Last is the collective behavior of my beloved legion of evil. Enough is e-freakin-nough and I won't stand for it for another minute! I'm DONE.
 
 


Walter was the first to test me. and lose.

Walter, take the trash out, please.
No.
Take the trash out.
No.
and then take the laundry downstairs.

He knows I'm going to keep adding to the list so he gets the trash to take it out and slams the door as hard as he can on the way. He comes back in and I tell him to give me his phone. He is now phoneless for the weekend which means he's stuck at home. with me. and his brothers. without his friends who don't like my rules. or his pesky brothers. Sucks to be him.

By the end of the night I wanted to strangle these heathens so freaking bad. I can't believe this crap! This whole month, it's been horrible... within seconds of me laying down the law, I have an entire house full of nice, cooperative, well behaved angel babies who are perfectly willing to work together with nice words to solve conflicts, to put themselves in time out in their rooms to calm down, to do their chores with no objections and actually want to spend time together at the supper table. Walter even went so far as to initiate saying grace! Seriously? What the hell? Where are my children!?

This morning, I'm feeling a little better about it. Oh, there they are! my demon seed. Having to give reminders on expected behavior makes me feel so much better. means possibly, they weren't tormenting me for an entire month+ just because they could.

Friday, October 25, 2013

The Goofy Child is out of control.

I wasn't going to write about last night until I found my sense of humor but I don't see that happening today. I was so embarrassed.

My husband was supposed to watch the kids while I went to Alex's parent/teacher conference but he ended up having to work late. I knew, the way the evening was going, that if I tried to leave any of the kids behind there would be problems. Problems between the Goofy One and his brothers, the girl and her uncles, Goofy and the girl... no one listening to anyone and all kinds of hell raising going on. There are so many combinations of how things could, and most definitely would go wrong while I'm too far away to do anything about it. So, fine. They've been fed, bathed, dressed for bed, clothes and backpacks ready for tomorrow, homework is done... I'll just take them with me.

I fully intended to use Alex's stroller. This time the need outweighed everything else. Three bad-ass kids and 2 hands... I needed an extra hand. But once we got to the school, I thought maybe it would be ok. I thought maybe they would stay with me with lots of directing, it would just be slow going.

HA!

Walking in was fine. Getting to the classroom was fine. Waiting our turn was ok, there was one moment where Alex bolted into the classroom, interrupting the parent/teacher conference in session but for the most part it was ok. Once we got into the classroom... all hell broke loose.

running and jumping and bouncing and throwing things and fighting... horrible. but not as bad as when it came time to leave. Trying to gather my hellhounds, they were not having any part of it. It was bad enough that the teacher and SLP witnessed my utter failure to control my demons but then the Assistant Principal walked in the door. ...and my humiliation is complete. ...you'd think. It gets worse.

I thought once we were all headed in the same direction, it would be fine. we could get where we were going with minimal fuss. The teacher helped us get to the hall and the Assistant Principal was walking with us. He heard me tell my Goofy One repeatedly to put his jacket on, to help out, he told the Goofy One it was cold outside. Goofy said, "hey. How do you know my name?" It wasn't until I had a moment to think that I realized, hey. he knows my name, too. 

anyway, to get out of the building we have to go straight, make a right at the doors, go down another short hall and go out the other doors. This is where they all went crazy. The girl went straight, Goofy went right, and neither one of them were listening to "stop." The Assistant principal tried to get Goofy to come back and go with us, but Goofy wasn't listening to him, either. I tried to walk Alex and the girl back in to get Goofy and Alex threw himself in the floor.

Getting Alex up and walking on, the girl decides she's going down this other hall and Goofy's guzzling at the water fountain. The Assistant principal redirects the girl who doesn't like people she doesn't know and comes running for me. Goofy stops at the bird cage. the girl stops at the bird cage. Alex does not want to stop at the bird cage.

Finally get Goofy's jacket on and head for the door with the girl in one hand and Alex in the other. Goofy gets to the door ahead of us and is still not hearing "stop." the door doesn't open for him so we catch up, he gets mad that the door didn't open fast enough and kicks the door which opens the emergency doors. I look back to try to catch someone's attention to help fix it when he lets out a war cry and bolts for the parking lot. still not listening to "STOP." By the time we get to the van, I'm cussing.

I shove the girl in where it's safe and put Alex's harness on while Goofy refuses to get in his seat. I get Alex buckled in and climb up to grab Goofy. Dragging him over the front seat to physically put him in his seat, I head-butt the girl who is bouncing around refusing to get in her seat. awesome. I buckle her in and argue with the Goofy One about his seatbelt instead of just doing it myself so I can buy a few seconds to smoke part of a cigarette before heading home.

The girl... I know what her problem was. She had spent the day with her mom and other grandparents so she doesn't have to listen to me anymore (we go through this every time) and she missed her nap because when her mom dropped her back off, it was time to go get Walter from tutoring and then the whirlwind of evening tasks that had to be done before we left.

Goofy... I'd like to say his problem is that he is the Spawn of Satan but I'm starting to think maybe it might be bad parenting.

I have to figure something out because this is just getting ridiculous. Walter saw the title of this post and scoffs at me, "You're just now realizing that?" as if Walter isn't just as bad. as if his attitude hasn't been horrible and his dealings with his brother and the girl just as awful. I asked him, "you think it's just him? have you heard yourself lately?" He looks guilty and says he has but we just make him so mad!

Yeah, something's gotta give. Something has to change. I'm pretty sure it's me. or at least, the way I do things.

I found this site- www.freeprintablebehaviorcharts.com, they have a lot of great things. I made up a new behavior chart for the Goofy One based on the problems we are having right now-

1. KAFOOTY
2. Use Nice Words
3. Use Calm Down Strategies
4. Conflict Resolution
5. Follow Directions

and printed up the conflict resolution checklist. I was very interested in their anger management section but their calm down strategies are kind of stupid (for the Goofy Child). The How Do I Respond worksheet looks about right for him but I'm still working figuring that one out.

As for Walter, I can understand his frustration. but still, that's no excuse. I think we need to work more on conflict resolution and calm down strategies, as well. I'm going to ask him what he suggests.

Any other suggestions?

Thursday, October 24, 2013

Effin ADHD

Irony: I'm trying to write a post on ADHD and I can't sit still or focus enough to gather my thoughts. Ahhhh, geez. best part? I scheduled a parent/teacher conference tonight. *curse words*

While I work it out, I found this much better post by Suburban Mama called ADHD, medication, and a different view. Go read that.


Alright,


To think straight, I need to move. Whether it's my fingers on the keys or cleaning the house or pacing, rubbing the sticker on my lighter, where the pen cap meets the pen, the emblem on my coffee cup, bouncing my foot, shifting in my seat... I need to have my body moving to focus my thoughts. When my thoughts are focused, my body moves. There are no quiet hands, no work ready hands. No be still and pay attention. There is no way to do both.

There are times that I just need my mind to STOP. I need something to occupy my brain to where I just don't have to think. Puzzles. Candy Crush and Farm Heroes ;)  Music to drown out my thoughts, much like blasting the radio to drown out the temper tantrum in the back seat. TV at bed time to listen to something besides my own brain. If something's not going, I can't sleep. When my body is still, my mind goes where it wants to go- that's not always a pleasant experience. This is one reason I let my kids play so many video games and youtube videos and crazy-ass music. I get it.

There are times that I need the world around me to just stop. When I put too much effort into things like meetings... I spent 2 hours in Walter's school for parent/teacher conferences. 2 hours. By the end, I was overwhelmed and acting purely on instinct. I just couldn't think anymore. LOL, I ducked from the principal. so embarrassing. By the end of that 2 hours, I just couldn't take anymore. I don't like to be touched anyway, and when it's someone I don't know it's even more uncomfortable, and when I'm overwhelmed it goes from being able to tolerate it to don't fucking touch me. I'm sure, looking back, that's not what he was going to do but, instinct, I ducked. That's 2 hours. I couldn't imagine 8+. No wonder Alex needs time in his room when he gets home. No wonder Walter is cranky with his brothers. No wonder Thing2 disappears and Goofy bounces off the friggin walls.

Then there are days, like today, that none of that helps. Nothing helps. Not the coffee, not the caffeinated headache pills that I take before important meetings, not the moving, not the mind stopping games or the music, not the silent admonition to focus, damnit! I'm a mess. These are the days that e-mails like, "he just needs to be more responsible with the next chapter." make me want to shank a ho. "Just be responsible." "Just pay attention." "Just listen." "Just remember it." sounds so friggin easy, doesn't it? uhg. Back on topic...

Goal: Alex will increase attention to task following sensory input for 5 minutes on 2/3 dd

Objective 1: Alex will attend to task following sensory input for 3 minutes.

Objective 2: Alex will identify 5 new preferred activities.

Measure by: Sensory Exploration - Observational Charting

Baseline: Alex's attention to task varies at this time. He has not established a variety of preference within the classroom setting.

Progress: Alex continues to explore new sensory input. He has seemed to like several including an adapted trike and the bungee chair. His reaction to other types of input has been inconsistent. His attention to task continues to vary.

The purpose of this goal was to determine the reason for his inattention. If you have a student with both epilepsy and diabetes... treating the epilepsy is not going to control the diabetes. Alex is autistic. He also has ADHD Combined Type = both inattentive and hyperactive.

Apparently, it's not the autism. That means it's time to start working on ADHD interventions instead of just the common autism ones. Medication is not an option for Alex for many reasons but mostly because he chews anything that goes in his mouth. Concerta is not chewable.

So, I went looking for ideas and ended up finding out that if you swallow gum, it does not stay in your stomach for 7 years and swallowed watermelon seeds to not really grow watermelons in your belly.

I think I'm going to put this hunt off until tomorrow.



Wednesday, October 23, 2013

Physician, heal thyself! Alex is fine.

I got a phone call the other day from a family member that I hardly ever hear from. At first I was angry. So angry. I've calmed down a bit and am shaking my head more than wanting to bash their face in with my phone and encourage them to pray for perfection.

I think you all jinxed me. I hear about all of these things happening to you and I'm all, "huh. that's never happened to us." and all of a sudden, I'm talking in the past 6 months or less, I've been Rain Man'd, Carly'd (yes, I know it's not a verb, it's also not an insult. There's nothing wrong with Carly being awesome but Carly is Carly, Alex is Alex. He shouldn't have to strive to be someone else.) Temple Grandin'd, Jenny McCarthy'd... you name it, someone has said it. At first it was funny. I actually laughed at the person who asked me if Alex was like Rain Man and then went to some friends and laughed even harder. Then it started to get old.

As of 4 days ago, I'm not laughing.

I've had people ask before to pray for Alex. To pray that he's healed and blahblahblah. Of course we'll take the prayers. What do prayers hurt? Why not ask? If you don't dare to ask, the answer is always no. Healing? Pfft, whatever. but there are other things Alex could use. A better ability to communicate, a better understanding of danger... you know, useful things. So, yeah, pray away and thank you for it but when the answer is no, I think there's a reason. When the answer is no, I think Alex is as Alex is meant to be and I'm ok with that.

This phone call, however, did not stop at the power of prayer.

This phone call went into bio-med which would have been fine if it could have been left at "no, thank you. I have faith that Alex is the way he was intended to be." but, no. It goes on into how Alex could be perfect because there were plenty of defective people who were born that way who were made perfect by this treatment and I shouldn't ever give up. I should never accept Alex as he is because that is giving up when the combination of Jesus and science can make him perfect.

and this is where I get angry.

Even now, I'm not sure how to respond to that without anger. I will ask,

who are you to decide what is perfect? Who are you to question what the Lord has made? What gives you the right to judge another person as lacking or inferior? Especially a person you have never laid eyes on. What makes your life so perfect that everyone else must measure up? You condemn the churches, declaring them to be unholy for not accepting my children and then state yourself that my son is not good enough as he is. "You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your brother's eye."

Alex is perfect just as he is. Accepting my son for who he is is not giving up on him. It's called loving him unconditionally. Jesus said, "...love one another, just as I have loved you."

He also said, “Woe to you, teachers of the law and Pharisees, you hypocrites! You are like whitewashed tombs, which look beautiful on the outside but on the inside are full of the bones of the dead and everything unclean." You told me that reading my bible was not enough. You said that I needed to assemble with other Christians to be able to live a holy life. I'm not sure I'm the one who needs the advice on "holy" living.

I never claimed to be a Christian, I'm just a sinner who loves the Lord. I'd rather be a deeply flawed disciple than a Pharisee with pretensions of superior sanctity. If that's not good enough for you, I don't know what to tell you. We are fine. We don't need your "perfection."

Monday, October 21, 2013

Alex: It's the little things

Putting Alex to bed is not an easy thing to do. I can't put him in the bed, I can't cover him up, I can't sit with him, I can't touch the bed. I have to wait until he's asleep and try to sneak in, which usually wakes him up and we start all over. There are times that all I can do is stand at the gate and look at him, hope he doesn't freeze to death in the night and wish that I could cover him up.

Earlier this summer, I happened to be standing outside his room to witness a beautiful moment. He was kneeling in the floor with the blanket behind him. He reached down with both hands to grab the blanket and bring it up around his shoulders before laying on his belly in the floor and popping his thumb in his mouth. My baby learned to cover himself up!

After that day, when I get his bed ready, I scrunch the blankets down just a little to give him room to grab them and pull them up on top of him. He's been covered up every night since.

Last night, I got up to investigate some clanking and banging noises (Goofy on his way to my bed). Walking past Alex's room, I hear a faint, "mama? mama?" I look over the gate to see a half asleep Alex huddled up at the doorway in his diaper with no blankets. "Come on, my baby, back to bed." He let me help him up and dived into his bed. Once he picked the spot he was going to lay, I put his pillow down. He lay on his pillow, I covered him with his sheet and reached down for his blanket. "Yeah. yeah. yeah." I covered him up, and kissed his head. "Goodnight, my baby."

For the first time since he was small, I was able to put my son to bed and tuck him in.

This morning, I peeked in on Alex to see him still in his bed, still covered up, sucking his thumb looking at me groggily. I lay his clothes outside his door and take the Goofy Child's clothes to him. Walking back out of my room, I see Alex's clothes disappearing under the gate. I look over the gate to see Alex sitting there with his bus harness in hand, pulling. He looks up at me and says firmly, "Come on, come on, come on. Goodbye." Well, Ok, then. Bossy boy :) I love it.

Sunday, October 20, 2013

Miracles are Made


"I'm sorry you are so unhappy."

I read those words in a very nice private message the other day and they surprised me. I'm unhappy? Since when? I thought about it and I just couldn't find it. I'm not unhappy. I laugh a lot. What are they reading? What are they seeing? They must mean the anger. I'm angry. but unhappy? No, I don't think so.

but... if you're angry, you're not happy... if you're not happy, you are unhappy... I am an unhappy person. Oh, yuck.

Why am I unhappy?

Sitting on the back porch in the warm sun, enjoying the quiet, letting my mind wander, I'm thinking about talking to the Goofy Child's teacher the other day about my desperation to find something to help this kid. I keep searching and searching and keep finding the same solutions over and over. I don't need these same solutions because I have already tried them and they didn't work. I need something new, I have to have something new. There has to be something...

something that will fix my broken child...

oh, hell.

I'm looking for a cure.

a miracle.

I am chasing rainbows looking for a magical fix. something that will make my boy be able to read at grade level with a wink of the eye or a wrinkle of the nose. No wonder I'm feeling so discouraged and frustrated. No wonder. I'm searching with all my might for something that doesn't exist.

"The truth is, Miracles are Made out of sweat and hard work. When you approach them with the need for time-lapse photography, you make the miracle into a lie."

When you are told that they make any amount of progress, it feels like they are telling you, "See? I told you he was fine."  but I hear what they are saying now. I get it. He's making progress. He's working hard. He's doing everything that he can. His teacher is bringing in whoever she can find to help him. He has a reading specialist. She brought in someone to work with him 1:1 for writing, even though it's not in his 504. It will take time. but they are working on it. he's making progress, step by step he is moving forward. Making progress doesn't mean he's cured of his difficulty with reading, it means that he's making progress. Making progress doesn't invalidate my concerns or his difficulty, it doesn't have to be one or the other. Saying he's making progress is not telling me that he doesn't need help.

I read something recently on bullying and the stages of grief. Ah, here it is, Moving Past Anger. She said, "The 5 Stages of Grief—Denial, Anger, Bargaining, Depression, and Acceptance—sometimes happen out of order, too. Sometimes you go through some of the stages, and regress back to previous stages. But you need to go through all the stages at least once, to get to the final stage."

I think you've been with me (repeatedly) through at least 3 of those since I realized there was a problem last January. I think I'm stuck on anger. In the post I wrote when I realized he couldn't read, I said, "I want to lash out at all of them. I want to blame them. I want to make them fix it. make them do something. I'm angry and I'm hurt and I want them to know it. I want to tell them that this is their fault. I want to tell them that I told them there was something there but they wouldn't listen. They told me he was fine. They told me that it was *just* ADHD. They told me "all kids do that." But they were wrong. I want them to know that and I want them to feel the weight of the blame..." I thought I was past that stage, but I guess I wasn't... or I returned to it.

I know, logically, that the anger is irrational. Goofy reads as well as Alex talks. I'm not angry that Alex is functionally non-verbal because I have accepted that. I know that Alex not talking isn't anyone's fault. It just is what it is. Alex's non-verbal status doesn't prevent him from being absolutely perfect, it doesn't make him less of a person. Someday, I will be there with Goofy, knowing that his difficulty is what it is but that while reading may be harder for him, it is not impossible and his struggle doesn't mean he has no worth, no talents, no abilities.

Understanding the reason for my anger, I still don't know that I'm ready for acceptance yet but having that knowledge is freeing. I feel like a weight has been lifted and I can see clearly not being smothered by the negativity that was squeezing and crushing my soul. Coming to the realization that I am still grieving, I understand better why I am so angry and that might make it a little easier to keep the flames under control. I hope. and to keep faith. Alex can talk. Goofy can read. It's ok. They will get there. I have faith.

Knowing that I am working my way through the stages of grief doesn't change my goals, it doesn't change my plan, but it changes my perspective.

"Miracles happen when you make the impossible possible and are, usually, the result of good old fashioned hard work."

Someday, we will pitch the tent in the living room and fill it with blankets and pillows and my baby will read me a story by the light of the flashlight.

We're just going to have to take it one word, one repetitious sentence, one picture clue at a time.



Saturday, October 19, 2013

No School Friday: Oh, the fun we have :/

10:30 am. I don't know that we are all going to make it through this day in one piece. Hopefully the height of the excitement (or the lowest point) was the moment I assaulted my son with a notebook. (No, I'm not proud of it. but it happened. we'll get there, just hold on.)

It all started back when Walter earned his freedom. For about a year now, he's been grounded to home (at first without a phone, but I kept forgetting to take it at the door) on school nights until after supper to make sure he has plenty of time with limited distractions to do his homework. This past report card, he finally got all but one grade above a C with only 1 missing assignment- this is awesome progress. He earned his freedom.

This morning, there is no school. (Dear School, you suck.) I was waken up by Goofy and Jason wrestling in my bed. I don't think Jason likes wrestling and I really don't think he likes a rollercoaster simulation. I rescue the hamster, tuck him in beside me and try to go back to sleep. Then the girl starts, "Mawm! I stuck!" (baby gate) and Alex responds with, "mamamamamama." OK! I'm up!

This is where I find that since my lovely husband bought chocolate syrup, there is no milk. along with no sugar. which means really nasty coffee. I'm not dealing well. There are e-mails and phone calls and badass kids. I'm going crazy.

Thankfully, Walter and Thing2 are willing to go to the gas station for sodas and will pick up a few packets of sugar and creamer while they are there. While they are gone, talking to my husband, I'm reminded that Alex has a -$.60 lunch balance so I need to check the other boys. While I'm checking the other boys, I need to check for missing assignments.

THREE Classes! Walter has missing assignments in 3 classes already! He's been ungrounded, what, a week? I'm mad. So, I'm sitting here taking notes and noting grade comparisons to discuss with my sweet boy. He comes in.

I ask him about the missing assignments and why they are missing to work on how to fix them. He lost a test that needed to be signed because he needs time to organize his locker but hasn't had time to do it. No problem, I'm thinking of times he can stay after for it when we start discussing 2 band assignments.

This is the slippery slope.

The missing band assignments are my fault. He needs to stay after on Tuesdays for band and he can't because I won't let him. Say what!? Have you mentioned band, ever? Well, he's telling me now. and he says he had to choose between band and tutoring on Tuesday and since I yelled at him for skipping tutoring Thursday, I would have yelled at him for skipping tutoring to go to band on Tuesday. (please note that Thursday comes after Tuesday) (and that we discussed band Tuesday in the sense that he asked which one he should go to and didn't respond to my text asking what the band practice was for) (also, please note that I get hundreds of e-mails from that woman so, no, I don't read them. neither does the neighbor dad.) so, this clusterfuck leads to this...

You're grounded for being (acting) stupid.
You can't ground me for being (acting) stupid! That's like grounding Alex for being (acting) retarded!
*THWACK*
Mom! I didn't mean it like that! I didn't mean it!

He is now in his room for his own safety and to give me a chance to get my act together and figure out how to deal with it properly. (Tara, I know. I heard you as soon as I sent him to his room ;) eventually my voice of reason will kick in BEFORE I clobber him with a stack of papers.)

Then the Goofy one comes back in with the hamster:

You know he sleeps during the day?
what? why?
he's noc-tur-nal. just go put him back.
Oc-to-ber. It's October.
Go put him up.

that's when the girl walks by with an open cup of water with pizza crust stuffed in it and a butter knife in her other hand and Alex- dear sweet Alex- tosses an entire bowl of Fruit Loops into the air to be able to crunch them under his feet. Nap time. Now. Get away from me.

I'm going to start a petition. There is never a time that "professional work days" should interfere with school days. I propose that they be held on weekends or in the evening because expecting me to deal with my own children on a school day is just cruel and unusual punishment.

But, the day turned out well. after I had a chance to calm down and realize I was an ass, I text my baby:

Me: I love you

Me: hey.

Me: hey.

Me: hey.

Me: I love you.

Me: I'm sorry I hit you with my notebook.
Walter: The number you are trying to reach is out of service.

So I walk down to his room to find a laughing Walter. I asked why his phone was "out of service." Did he BLOCK my calls!? No, he made that up. I ask him if he got my messages, he did, he's ignoring me. So I smack him in the back of the head. "Hey! Are you sorry for THAT!?" pfft, no. Freakin little jerk. I walk back upstairs and get a text message. "I didn't mean to call Alex retarded. I meant mentally retarded." Ah, the difference between slang and medical terminology.

Even after "Mental Retardation" was replaced with "Autism" as Alex's educational diagnosis, the scores stayed the same- cognitive functioning "below the first percentile." Whether it's the testing or the kid, the results are the same. It is what it is. I guess the only thing to do is explain to Walter that Mental Retardation is out, Intellectual Disability is in.

As for the rest of them... Nap Time. It does a mama good ;) The evening was so much better than the day.

Friday, October 18, 2013

Sharing the Joy of Writing with the Goofy Child...

Ok, the Goofy one brought home writing paper from his teacher, as promised. Now to figure out what to do with it.

I looked long and hard and googled lots before I came up with the perfect writing subject- Goofy's Halloween costume, and an awesome way to go about it (based on what I saw at school)- he will draw a picture and tell me a story, I will come up with a few sentences based on his answers and he will write them! This is going to be FUN! (picture a mother/son Norman Rockwell moment)

I search out my child, rescue the hamster, and sit the kid down beside me, dividing crayons between him and the girl.

What are you going to be for Halloween?
Jason.
Yeah? (no, he's not.) Why are you going to be Jason?
Because he's cool.
What's so cool about him?
He's cool because he's a killer.
Um... ok... who does he kill?
Everyone in the whole city.
Oh... so he kills... why does he kill everyone? are they mean to him?
No, he just kills everyone.
Because he wants to?
Yeah.
And that's why he's cool?
Yeah.

ok... that's disturbing. Let's find something else.

What are you going to do for Halloween?
Go trick or treating.
Yeah? What will you see?
Candy.
What else?
Candy.
But... you will see other things, what else will you see?
I told you, candy.
Ok. how far are you going to walk?
Really far.
Well, what will you do when you walk?
I will say "trick or treat" and I will tell jokes.

good enough. I write the sentences.

"What is that!? What does that even say!? I can't read it!!!!"

Apparently, much like some of our kids' food can't be touching on their plate or you get an epic meltdown, the Goofy Child's letters cannot be touching. If your t arm dares swoop down into the i body it means the entire page is CURSIVE!!!! and your Norman Rockwell writing practice turns into Mom dragging a screaming kid out from under the living room table and throwing him in time out until he decides he can speak to his mom with a little respect while the girl wears a look of disbelief and yells, "MAWM! MAWM!" pointing at the Goofy One as if she's never seen the shit hit the fan before- much less caused it herself on occasion.

and then, while you are preoccupied, your other son will start munching on crayons and THANK GOD it's a 3 day weekend so you don't have to explain to his teacher how you left him unsupervised with art supplies again.

Thursday, October 17, 2013

Goofy's parent/teacher conference

The good news: my husband did not cause an embarrassing scene in the Goofy Child's classroom this time.

The bad news: that was me. 

We were sitting outside the door in metal folding chairs, glaring at the walls decorated with paper after paper on "If I stayed up all night." Ok, that was me, too. But look, paper after paper of fully grounded letters with perfect spacing and nicely formed letters and beautifully colored pictures of what is actually happening in their stories... until you get to my kid. I'm closely examining these letters and drawings. Checking out the story lines and writing and such and I'm mumbling comparisons of like 24 kids to my 1. My husband is all like, well, blahblahblah with the perfection of our kid and knowing he has trouble and all that horse crap. I look at him, "I don't know what you're talking about. This is so. fucking. typical. Just ask them, they'll tell you." He laughs like I'm joking. (I love that the other kids are rocking it, I do not love that that I keep hearing how "typical" Goofy is and how I worry too much.)

Now, this is before we even get into the classroom, the scene comes a little bit later.

We started with how, after report cards came out, he's gone from a reading level 2, to a reading level 3 and how level 4 is meeting expectations. ...really? because his report card says level 1. Oh, that was a mistake. Here, let me fix that for you and I'll fix it in the computer, too. what level is he really? Who knows. whatever. so we moved on to discussing how much progress the Goofy one is making. How much better he's doing. how he's catching himself in mistakes and putting in so. much. more. effort.

My husband notices the special paper they use and he's like, "didn't I buy some of this?" Honey, it doesn't just hang around. It gets used. But yes, you did. and he's all, "well maybe I should buy some more and he can practice more. and she's all, "that's such a great idea." and "I can send some home." and I'm sitting there listening to him ask this wondering just who he planned on working with Goofy on this, thinking, you mother lovin' son of a preacher. I know who's going to get this shit. Sure, just let me add this to my handy dandy, ever growing list of reasons you aren't getting laid tonight, asshole. So, we're getting special paper and I'm get extra time on homework.

(Speaking of which, Walter just comes up to me in shock- Mom! He just wrote "go to hell!" I said, "hey, he's writing" and raised my hand for a high 5 while Walter looked at me like I'd lost my flippin' mind. Which, actually, what the boy wrote was "go to hell bish." and then "wat fug" oh, man. we need to find his real parents soon. That cannot be my kid. well, never mind. just don't.)

Where were we?

come to find out, he's making so much progress and putting in so much more effort because there's now a lady who comes in to work with him on writing 1:1 and she gushes over how freaking awesome he is and does a full out celebration for every correct space and letter. I'm pretty sure I told the teacher about that in his introduction letter.

"Typical" is not in their vocabulary tonight. "Typical" is so last month. This month, it's "not uncommon." and yeah, the examples of work hanging in the hall were from last week and yesterday so he's not exactly consistent in his efforts but he shows the ability for effort!

and this is where my husband goes beyond stepping into my danger zone and goes right ahead and pushes the red button. He knows I'm considering dyslexia so he asks, "Isn't it normal to write a few letters backward?"

*explosion*

General

  • Appears bright, highly intelligent, and articulate but unable to read, write, or spell at grade level.
  • Labeled lazy, dumb, careless, immature, "not trying hard enough," or "behavior problem."
  • Isn't "behind enough" or "bad enough" to be helped in the school setting.
  • High in IQ, yet may not test well academically; tests well orally, but not written.
  • Feels dumb; has poor self-esteem; hides or covers up weaknesses with ingenious compensatory strategies; easily frustrated and emotional about school reading or testing.
  • Talented in art, drama, music, sports, mechanics, story-telling, sales, business, designing, building, or engineering.
  • Seems to "Zone out" or daydream often; gets lost easily or loses track of time.
  • Difficulty sustaining attention; seems "hyper" or "daydreamer."
  • Learns best through hands-on experience, demonstrations, experimentation, observation, and visual aids.

Vision, Reading, and Spelling

  • Complains of dizziness, headaches or stomach aches while reading.
  • Confused by letters, numbers, words, sequences, or verbal explanations.
  • Reading or writing shows repetitions, additions, transpositions, omissions, substitutions, and reversals in letters, numbers and/or words.
  • Complains of feeling or seeing non-existent movement while reading, writing, or copying.
  • Seems to have difficulty with vision, yet eye exams don't reveal a problem.
  • Extremely keen sighted and observant, or lacks depth perception and peripheral vision.
  • Reads and rereads with little comprehension.
  • Spells phonetically and inconsistently.

Hearing and Speech

  • Has extended hearing; hears things not said or apparent to others; easily distracted by sounds.
  • Difficulty putting thoughts into words; speaks in halting phrases; leaves sentences incomplete; stutters under stress; mispronounces long words, or transposes phrases, words, and syllables when speaking.

Writing and Motor Skills

  • Trouble with writing or copying; pencil grip is unusual; handwriting varies or is illegible.
  • Clumsy, uncoordinated, poor at ball or team sports; difficulties with fine and/or gross motor skills and tasks; prone to motion-sickness.
  • Can be ambidextrous, and often confuses left/right, over/under.

Math and Time Management

  • Has difficulty telling time, managing time, learning sequenced information or tasks, or being on time.
  • Computing math shows dependence on finger counting and other tricks; knows answers, but can't do it on paper.
  • Can count, but has difficulty counting objects and dealing with money.
  • Can do arithmetic, but fails word problems; cannot grasp algebra or higher math.

Memory and Cognition

  • Excellent long-term memory for experiences, locations, and faces.
  • Poor memory for sequences, facts and information that has not been experienced.
  • Thinks primarily with images and feeling, not sounds or words (little internal dialogue).

Behavior, Health, Development and Personality

  • Extremely disorderly or compulsively orderly.
  • Can be class clown, trouble-maker, or too quiet.
  • Had unusually early or late developmental stages (talking, crawling, walking, tying shoes).
  • Prone to ear infections; sensitive to foods, additives, and chemical products.
  • Can be an extra deep or light sleeper; bedwetting beyond appropriate age.
  • Unusually high or low tolerance for pain.
  • Strong sense of justice; emotionally sensitive; strives for perfection.
  • Mistakes and symptoms increase dramatically with confusion, time pressure, emotional stress, or poor health.
    Read more: http://www.dyslexia.com/library/symptoms.htm#ixzz2hvwU2IWc

and now, the teacher, the reading specialist and the 5:30 appointment all know that Goofy wasn't potty trained until he was 5, still isn't night time trained, can't bathe himself, dress himself, tie his shoes.... I can go on and on.

*awesome*

She says to have trouble tying shoes is not uncommon. Her son couldn't tie his shoes. They worked with him and now he can! My brother works with him and Little D! Little D got it. Goofy didn't. Goofy can't get the fine motor skills going AND he has trouble with sequencing. There are just too many steps and it's hard to put them in order. (see list above)

She says she gets it. She understands my concern, "moms worry." as a mom, she can understand that. Dads don't, her husband is the same way. I really want to tell everyone how they can take the "worry" and the "typical" and the "not uncommon" and describe in detail how they can shove it where I will never have to hear those fucking words again but... you know. Even if they do, someone else will be saying them before too long.

I will be the first to admit that my boy is perfect. He's amazing. I can list way after way that the boy amuses me, how he pleases me, all the things that are right. He is wonderful and I'm glad he's mine, BUT, I cannot pretend that there is not something wrong. I cannot know that there is somewhere that he needs help and just ignore it and pretend that everything is fine. He can't read. His writing is awful. It's not fine. He's not normal. He's not typical. He's not not uncommon. There is a reason he struggles, I need to find it. He needs help and I will move heaven and earth, no matter who thinks I'm overreacting, to make sure he gets it.

I came home, grabbed a beer and hit the bath tub. by the time we got around to Goofy's homework, I wasn't exactly sober. but that's ok, I think it may have actually been an improvement. Not exactly sober writing this either but... *shrugs* C'est la vie. Welcome to my world.


Wednesday, October 16, 2013

Adventures in Math

You know the relief that comes with having an easy school? Where you don't have to beg or cry or fight? No fit throwing, no demanding? No need to examine every move that is made? I just found that feeling this morning. I gotta tell you, it feels good.

Alex's school is easy to work with, but there is still a lot of work. The Goofy One's school... has good intentions... moving on..

Walter has trouble in math. I have no doubt what-so-ever that this one is rightfully my fault. I haven't worked too hard with him on math because neither one of us really know what we're doing. Take the ADHD leading ADHD and throw in an astounding inability to do math, you end up with a hot mess. His math teacher is insisting he learn his math facts. Fine. I gave it a shot. He says he knows all the way up to the 4s. ok,

"What is 4x7?"

He says, "Well, I don't know 7s. I know the 4s."

"This is the 4s. 4x7."

"Oh, 24." "wait...32."

um... is it? which is it? either? shit. I don't know. I'm looking around the room and it seems no one knows the answer. Well, crap. That didn't work. e-mail, it is. So, I clicked on my yahoo tab and sent out a bat signal. My Mystery Man is gone. He moved on to being the big boss of his own school so the only person I really know, like, and trust in this school enough to CC them on my parent/teacher e-mails is the principal. Poor guy.

So, I e-mailed the math teacher and the principal asking where to get help because Walter tried the tutoring and it was to get help with homework. He doesn't need help with homework, he needs help with math.

Late yesterday morning, his math teacher called me. (yeah, on the phone. *sigh* but I think I got most of it.) The tutoring he's going to Mon-Thurs can help with math, she can give him a note that he needs to work on math skills instead of homework. Again, she has him in advisory and he can get extra help there. Also, his math teacher (I think) from a past year hosts tutoring on Wednesdays. He can opt to go to her class instead of the A+ tutoring. Walter's excited about that.

That's not all.

This morning, I went in to drop Walter's meds off because he didn't heed my 10,000 warnings that if he couldn't be responsible enough to take his medication in the morning, I was taking it to the nurse to give him in the mornings (where his mother was each morning that he "forgot" almost a month's worth of pills is totally irrelevant.) which was a whole 'nother episode in how mom sucks at math. "Mom has 30 pills. The nurse has 8 pills. How many pills does mom need to give the nurse to make it through the month?" fuckin' word problems. I hate math.

(Don't tell the Goofy Child, he's the only one so far who's doing good with it.)

which, wasn't even the point. I saw the principal while I was there. Usually on my way out of the buildings, I stop back by the offices to wave- letting them know I'm leaving. This morning, it's the principal who acknowledges my wave but then catches me before I head out the door. He heard what I said in the e-mail and he is on it! They will do everything they can to help Walter. He has a plan, she has a plan and he is going to talk to Walter. Walter has 20 weeks to get this stuff down before heading to high school and they are going to make sure he has the support he needs every step of the way.

High School. We're not even going there right now. Right now, I am going to bask in the feeling of being able to leave my boy in capable and willing hands. He's ok. They got this.

Hopefully, by the time he gets there, Walter will be able to teach Goofy math facts.

Monday, October 14, 2013

Poor "tired" Alex.

Alex's aide says he had a good day today. except he was tired.

tired. *snort*

freaking little monster. I wonder WHY he's tired.

Things have been a little rough these past few days. This week's goal is survival. I have an Alex induced almost-migraine. The light/sound sensitivity with a solid ache that isn't full blown excruciating pain (yet. give him time. Remember my post, Is This It? ).


I'm really starting to hate Avenged Sevenfold. I'm sorry, Rae, but the Goofy One's pushed me to it. over and over and over... this one-



and then, even worse... taking the computer away doesn't fix it because he recorded it on my phone with crappy mic/speakers which adds in a whole bunch of static and I don't even know. It's bad. then when I finally got him to shut it off, we're sitting there at the table, eating in the almost dark and Goofy sighs, "mom, this macaroni and cheese tastes like last week." Well, it's last night's so close enough. eat it or starve.

Bed time because I just can't take another minute. I just can't fight them right now so they are just going to bed with the TV on. I don't even care. except Alex. Alex is all... mom. mom. mom. mamamamamama. goodbye? goodbye, goodbye, goodbye? *motor boat* *flapflapflap* you know, when I picture other kids flapping, I picture it being quiet. individual hands out to each side, flapping away. Not Alex, no, that would be too quiet. his hands flap together. *chicachicachicachica* flappy-clapping. then run to the window, *knockknockknock*, back to the wall *thump* *motor boat* *flap-clap* mamamamamama, goodbye!? all freaking night long, every freaking night. and then as if that weren't noisy enough... one of these demon spawns sneaked him clappy hands!!!!


 
 
Why won't these things GO AWAY!?!? Every time I hear them, I hate BounceU even more and I can't purposely throw them in the trash because Alex loves the damned things.

Homework? Not a chance. We'll do it tomorrow. or take the missing assignment. (just don't tell Walter)

and yes, we tried Melatonin. several times.  ;)

Saturday, October 12, 2013

Reading Workshop and Goofy's Report Card

I signed up for this workshop because it's given by reading specialists. Including the one who works with my Goofy Child. Specialists have to have good information, right? They have to be able to tell you what to do? They have to be better than Google, they're specialists for goodness sake! So, I'm going.

(Hey, did you know that "supplemental reading services" is remedial reading!? True. I heard it at the workshop.)

The first thing I hear is, "read to him." I swear by all that's holy, one more person tells me to "just read to him" and to not be afraid to read the same book over and over, they're likely to get smacked in the face with Bad Kitty.

Now, I can understand why these are on the list because it hasn't been all that long since I found out that I didn't have to make him help me read, reading TO him was just as good, but, damnit! it's NOT working!

Read regularly. Read out loud. read directions. Read recipes. Read environmental print. This one was interesting- get picture books and ask him to tell you a story based on the pictures. Sit next to each other and let him follow the story, let him turn the page. Use funny voices, make it into a game. Read expressively. Have guest readers- if they go visiting, send a book with them for someone else to read.

You don't have to read at their level, listening skills are generally higher than reading skills- you can read chapter books. (anyone know something scarier than Mostly Ghostly stories that will catch his interest but not give ME nightmares? Would Goosebumps be right up there with the Zombie movies, Freddy and Jason?)

Let him pick out his own books. Let him choose what he's interested in. Oh, because I totally forced him to check out nonfiction books on weather, snakes, and cats giving birth because I enjoy them. Ok.

I'm frustrated. I've already tried all of that and it's NOT working! Give me something new, dangit!


Then, like magic... like mind reading... something new!

Go Fish.

You write the sight words or spelling words on index cards and play go fish! That's exciting! We can do that!


OMG. I just re-read what I wrote... Goofy likes nonfiction books. He has no use for imagination. He doesn't pretend beyond his special interests of war, zombies, and Power Rangers with the simple theme of fighting. and being a literal thinker, facts are easier to process than story lines. Of course he doesn't like fiction books. Well, would you look at that- something new.

anyway,  Goofy's reading specialist will be going to Goofy's parent/teacher conference. She says Goofy is doing really good. *suspicious look* he is? Oh, yeah. he's getting more confident and seeing that he can actually do some things. Well, shit. If he's doing so well and making so much progress... did I not try hard enough? Is something I did or didn't do the reason he was so far behind? *failure*

I came home to look through the backpacks I didn't get a chance to look through before I left and see that Alex had a great day. He only dropped once. Considering the fact that I had just e-mailed his teacher that very morning a warning that that kid was freaking BAD... *failure*

I get to the Goofy One's backpack and see the 2nd notice on his parent/teacher conference. I meant to say no or warn her I would be late on the first one but I lost it. *failure*

Then comes the manila envelope...




Let me tell you, I have never been so happy to see such a crappy report card in my life.

Plenty of areas of concern and needs improvement and a note on the back: "Goofy is reading at level 1. At the end of term 1, a level 4 is considered meeting expectations."

Thank you, Jesus! I'm not crazy. and it's not the ADHD. and apparently, the 504 isn't working.

*in yo face! dance*




Now to get my butt in gear on evaluation questionnaires, Section 504, Procedural Safeguards, and IDEA. again. and then to find out what you actually DO about it once you have the IEP.

Anyone have an IEP for Specific Learning Disability? What kinds of things do you have in yours?
 

Friday, October 11, 2013

Middle School Parent/Teacher Conferences

Once the girl went down for a nap, I raided my closet going through outfit after outfit trying to find my "mom." An hour or so later, I finally settled on my funky feather print skinny jeans, a black long sleeved t-shirt, and my favorite boots that I can manage Alex in. (Seriously, someone needs to tell Walter that real moms wear yoga pants.) I packed a diaper bag for Alex, because Thing2 said he would keep the girl for me and Goofy can take his homework. At 2:45, I plug in my straightener and lay out my makeup. I get set up and run for the front porch so I'd be waiting when Walter got off the bus and modeled my outfit for him. He looked me up and down and promptly begged to stay home. He swore he could watch the Goofy One, he would let him play Black Ops 2 the whole time I was gone and Thing2 would be there to help.

Well, I am only going to be 2 minutes up the street. and if Goofy's playing Black Ops 2, he's not pestering his brothers or tormenting the baby. ok, fine. but if Walter's not going, there's no reason for me to be fancy. So, I go back, unplug my straightener, and throw on my Alex clothes.

As soon as Alex got off the bus looking like he was dressed by a 2 year old in his mismatched clothes and one shoe off, I put him in his seat and we head for the school. Awesome day for him to have to borrow pants from the nurse :/

We slowly but surely make our way up the stairs with many verbal prompts and maybe a minor amount of begging. Walking into the school on the way to the gym, we run into Walter's principal and counselor. These people, man. Every person I ran across this evening was just... amazing. Walter's principal said hi to me and stuff and then he started talking to Alex and Alex responded! There was the whole usual hi and request for a hug but then he told Alex that he was Walter's principal and you know as soon as Walter's name is mentioned, Alex is all into it. It was great. Then the counselor was telling Alex that they had Thing1 and Thing2, which isn't quite as interesting because they aren't Walter :)

We continued on and turned the corner to the gym. That's where I saw for a fact that my idea of "slow time" and the principal's idea of "slow time" are very different. People! Everywhere! Wall to wall people scattered here and there and they all look the freaking same! Walter walked me through his list of teachers before I left to remember certain memorable characteristics in each person we saw at Curriculum Night to go with faces to put with the names I was looking for today but there are so many, you can't hardly pick out individuals. There's no rhyme or reason, just clusters of bodies. The assistant principal walks up to say hi but gets caught by someone needing help. I heard him explain that each grade had a wall, which makes it so much easier. I found our wall and was able to pick out a person. *sigh of relief* we go find a seat.

The seats are grouped in front of the teachers' tables, each teacher and their group of chairs having a (mostly) clearly defined space. All you had to do was keep track of who was there before you and where you fall in the line. A lot like standing in line without the discomfort of people hovering and invading your personal space. I loved this part. LOL, oh, man... and it was easier to keep Alex's hands in his chair space. mostly. Waiting for the first teacher, there was a guy sitting behind us. Alex turned around in his seat, looking back and I was watching his hands and the guy's shoe strings. Alex looked like he was considering it so I said, "don't touch him." The guy looked at me wide-eyed, "I didn't touch him!" I'm not sure if he was joking or really thought I was talking to him but he seemed to have a good sense of humor. and then Alex groped the assistant principal. I do have to admit, the shirt was pretty.

I had a list of 3 teachers I was after. The first one I recognized was actually #3 on my list. Science. Walter has a C. He has a C because he failed a test. No, there is not a pattern of test failing yet, he's only given one test so far, and Walter hasn't been mentioned in team meetings as having noticeable trouble so he's cool. Alex did great for this one. The teacher said hi and talked to him a little about Walter. Awesome.

We moved on to #2 who's line was quite a bit longer but shorter than #1. This one is important but I already know what the problem is and what to do, I just need the information. Math. Alex is getting antsy. This one is only going to take a few seconds of talking, it's mostly waiting and I know I'm pushing it with Alex but it's a long line and we're almost there. Come our turn, we get seated and start talking, I'm writing my name on her list and Alex throws his cereal. I go get the cereal, he throws my pen. The teacher is great, the lady he threw his cereal at is great, I rush through getting the information for tutoring- She offers tutoring in the morning from 7:35-8:05 but Alex's bus comes at 7:45, Walter's comes at 7:49, and Goofy's at 8:24. I can't get him there for morning tutoring but they have an A+ program where A+ students from the high school come in for tutoring after school and Walter has her for advisory so he gets extra help there, too. The D+ here is not a lack of effort so the D+ doesn't matter to me. I know I have to get Alex out of there. The lady I really want's line is even longer but Alex is DONE.

We go out to the hall for a break where Alex goes batcrap insane. He's swinging on my arms when one lady walks by with a huge smile. You know the smile of recognition? the "oh, yeah, been there." grin? yeah. one of those. He's pacing and stimming on the locker combination locks and a door knob and vocal stimming when lady #2 walks by with a smile and a hi.

After a bit, we try to go back in. Remember karma? Screw karma! I effing hate her!!! I've been raising hell at Alex's school about staff trying to break his "falls" and stopping him from hitting the floor when he drops. Leave him alone, I say. Follow his BIP, I say. He's not going to hurt himself, I say. He knows what he's doing. and then tonight, he throws himself down... and I try to catch him. *reflex* I quit. Why does this only happen in front of people? I can do it right 10,000,000 times but when I mess up? You can bet that it will be in front of witnesses. every time.

We walk outside and get to the part I've been dreading the most. We inch our way down the first set of stairs and get to the landing. Where Alex gets pissed and decides enough is enough. He wants goodbye and he is NOT walking down another step. He's trying to get away from me to run and there may have been some rolling around on the ground- this part is a little unclear since I was about to have a freak out of my own- when a woman stops.

She says hi and asks him if he has a brother or sister in this school. she talks to him about completely unrelated things. redirection! Why didn't I think of that!? I freaking love her! Once he was calm, she let him know that goodbye is down the stairs. We inch our way down the rest of the stairs with minimal scary missteps and head home.

At home, the girl is good, Goofy is playing at the neighbor's house and my husband is 15 minutes from home. If I leave now, I have time to get that last teacher before the reading workshop starts... Since Alex so desperately needs a break alone in his room anyway, I leave his brothers in charge and go back to see #1 before heading to the elementary.

Teacher #1 Literature. Walter has a C in her class but he has a C because he "fails to finish independent assignments." I want to know why his report card says that he "fails to finish independent assignments" while parent portal says no such thing. I have been watching for exactly this! and nothing until report cards!? Apparently, "fails to finish independent assignments" is singular. who knew!? I shall have to remember that one. *sarcastic comment removed*

Anyway, now I have a decision to make...

Was Walter ONE missing assignment away from not being grounded for 6 weeks or is it *just* ONE missing assignment?

Even with the one, he met the C and above rule, except for math, which was not a lack of effort. He actually worked hard for that D+. I think he's free until the next report card as long as parent portal doesn't say that he "fails to finish independent assignments." and that declaration got me a smile, a hug, and a heartfelt thank you. As if I was the one who worked my ass off for it, lol.

Thursday, October 10, 2013

Physical Therapy and IEP

Alex "graduated" from Physical Therapy to Adaptive PE in first grade, I think. It was the year that everything went wrong. The year I found out he wasn't getting APE when it was already in his IEP, the year he got less than half of his speech minutes because she was following the ESY schedule, the year that OT wasn't doing sensory things because his IEP didn't say what sensory things she was supposed to do (or something like that) and she needed to do her own evaluation, the year they were trying to force him into a harness on the bus when a harness wasn't in his IEP, the year his teacher didn't read his IEP at all. It was his first year in the regular school. It was also the year I started throwing a fit, demanding a special school and threatening to yank him out of the fucking district by any means necessary- honest or dishonest- because they were beyond incompetent- and then visiting other schools to find out how to get him there because there "were no" special schools in this county. It's the year the principal made sure there were no lawyers in the IEP room before she went to do something else and the year I found out advocates were worthless because they don't even talk.

But, he graduated from Physical Therapy because he didn't need it anymore. I never thought to question that until this year. I've been thinking about asking for evaluation lately because things change and I think enough have changed to warrant checking out but then in one of my too many stormings  of the principal's office this year, the physical therapist was there to help us out. She said she doesn't know Alex very well because he doesn't need physical therapy. Oh. he doesn't need it. ok. That answers that, right? But then a few days later, I wonder if she meant he doesn't need it or doesn't have it. I wonder if maybe she picked the wrong word (I do that a lot).

Then comes the realization that I'm going to have to walk Alex down 16 (sorry, I was wrong yesterday, the girl made me count them again this morning) concrete steps at the middle school. Usually, I'd be fine with that, I'd only have to make sure one kid doesn't fall- or try to fix it to where when he knocks me off my feet, I land on the bottom- but the girl was supposed to go with us and she's not too steady, either, and even with Walter taking her and me taking Alex, I'm going to worry about her and have my attention split. Thankfully, T2 said he'd keep her at home. but it never hurts to ask. The worst they can do is say no.

So, when I *cough* went visiting Tuesday, I asked how to get a physical therapy evaluation. He says according to special ed law, they should work on things that Alex will need for his home school- which would be the middle school- and there are many stairs there. The way it was phrased at first had my heart racing, I thought he was going to end up back in the middle school! Why else would they have to work on getting him ready for it? right? heart attack. Do you have any idea what it took to get him out of the regular school!? And now you want to send him back!? Thank God he cleared that up. whew. that was scary.  I explain that there is also trouble with the bus steps. At the beginning of the year, I was carrying him down, now he walks down with verbal prompts and then usually falls down the last few or jumps at me. so, "simple!" he says. "Get a prescription from the doctor and we will do the evaluation," he says.

Except... not so simple.

It has to be part of his IEP. which means we need to have a new IEP meeting. quick as that, I've got a death grip on his current IEP and I don't want physical therapy. Back away from the IEP before someone gets hurt. This is the perfect IEP. I love this IEP. Everything I want is in this IEP. We're keeping it. *defiant glare*

But.... Alex's teacher this year is perfect. I love her almost as much as I love this IEP. She gets Alex. Everything I've thrown a fit about she is already doing right or has already said herself. She understands. Don't tell Teacher#2, but I think this one might be the best teacher ever. and since she really gets him and she's freaking brilliant in her practical and effective solutions, maybe she might have a better IEP. The timing is scary because it's October, which means his IEP will be due in October and if his entire team changes again (Good Lord, please...) then they are going to have to come up with a new IEP based on a kid with horrible behaviors who refuses to work with them. With it being in March right now, and his behaviors calming down after Christmas break, they have a slight idea of who they are making the IEP for.

This is the decision I made... close my eyes and jump. Trust her, trust the principal (yes, I know, but eventually that gamble will pay off) and just go. So, I agreed and sent her my list from last year.

Wednesday, October 9, 2013

"Why no stroller?"

I wrote a post on tonight's parent/teacher conference night at Walter's school. I made a comment that I couldn't take Alex's stroller and I got a question...

"Curious - why no stroller for A? I'd drag a stroller for 4 if I had the money."

I could mention a hundred thousand reasons why not, like 17 stairs to the front door, but they'd all just be covering my embarrassment of the truth.

Truth is, I'm scared.

I act like things don't bother me. I hide behind anger or sarcasm or mockery. I do my best to turn it back on them. I crack jokes, I subtly or straight up make fun of what is said or call them out on their ignorance, arrogance, and bad manners to make sure they know their words can't touch me... but, really, sometimes it bothers me. Quite a bit.

"Frankly, it's embarrassing that you cannot even get your child to walk when he is obviously capable of doing so (as well as being capable of doing many other things that you are not making him do)."

"The fact that you apparently have the same problems with your other kids also suggests that you need to start acting like a real parent to them."

"And I would suggest that Alex is capable of learning to listen to you and not wander if he isn't a rebellious brat."

or...

"Perhaps you could teach your son to not step right in front of people? You and he are absolutely entitled to go though your life not getting The Look, but, um, teaching your kid to give others the personal space to which they are entitled would likely work better."

To hear this from a stranger is fine. Well, it's not, but it's not unexpected. As one of them said, I can easily say that they don't know the situation, that they don't know Alex, that they can't possibly understand. I can take a few minutes to set them straight and have fun doing it until I actually get pissed off.

But what would the school think seeing me roll him down the hall nice and easy, calm and content? They have to walk him all day. If not in the same halls we're walking, in halls that are similar.

Or, even worse, what are the other special needs parents going to think? They are walking their kids. What is wrong with me that I'm too lazy to put the effort in when I am no different from them and Alex is no different from their kids? Granted, I haven't seen anyone else's hand wrapped in their kid's shirt yet but I'm usually busy making sure my own kid doesn't run off.

Their judgment I can't take. Not on something I'm not 100% sure on.

I can take his stroller to the doctor's office, the store, to the library, the zoo, wherever we go that he won't be able to walk the whole way or stay with us without getting overwhelmed by the things around him and the things expected of him and drop to the floor or bolt for the door but to take it to school?

No. I have a hundred thousand reasons I can give you...

Tuesday, October 8, 2013

The insomnia that comes with Stupid Decisions that the school didn't make...

You know those things you look back on and wonder what in the world you were thinking? Yeah, I have more of those moments than I would like to admit to.

I said I was going to do something and now I'm freaking. bad. Up at midnight-can't sleep-freaking.

Wednesday is the reading workshop at the Goofy One's school. They have specialists coming in and everything. I really need to go to this one because I'm getting conflicting information on where he should be. I need real information. something.

Wednesday is also the SSD's ASD/AS/PDD resource fair. I would LOVE to go but Goofy's my 1st priority this night.

Wednesday is also the middle school's Parent/Teacher conferences.

The principal has an AWESOME solution... conferences start at 4, reading workshop starts at 6. I can go at 4! I'll just take the kids with me! Freaking BRILLIANT!

Until I lay down.

and realize exactly what that means.

Walter has to go to help me with Goofy and the girl. Alex will be great, Fruit Loops will buy his cooperation. I was laying there debating between food and coloring to keep the girl occupied when out of the corner of my mind's eye, I saw the Goofy One.

Goofy is the reason Walter and the girl are going. I could almost be ok leaving Walter home with the girl... almost... but no one can watch Goofy. They can't handle him. even on medication. and during the conferences, while I'm supposed to be listening to the teachers and being there for Walter, Goofy will be spinning in circles, chatting at strangers, touching them and asking wildly inappropriate questions. I will ask him to come back and he will ignore me, Walter will get embarrassed and go try to catch him and bring him back which will make Goofy scream and run farther away and all the while, I can't walk away from Alex because he won't have his stroller. (First person that suggests I learn to be a real parent and discipline my child, wins themselves a free kid. Just saying.)

uh-huh, raising *just* ADHD awareness, one parent/teacher conference at a time. Go, me. :/

but, whatever. Gotta do what you gotta do. That's not the part that has me hyperventilating and giving up on sleep. This is...


How in the hell am I going to get Alex back down all of those stairs!?

Monday, October 7, 2013

Bad Goofy, Poor Jason

First of all, I have a serious question... can you give a hamster a bath? He needs one. desperately. Poor little guy.

Hamsters should be in their cage. or rolling around on the floor in a cozy little hamster ball. But not Jason. Oh, no. That would be too easy.

Jason is rolling around in mud and climbing on mud balls, and being carried around in the little hands that made the mud balls, and being passed back and forth over the back fence between Goofy and the neighbor girl to perform death defying acts of God knows what sort. How does he get out there, you ask? I don't know. Goofy is a pro at sneaking him places he shouldn't go. I'm thinking about doing a strip search every time he walks out the door.

When he's not outside getting filthy, he's in the house getting filthy. splashing in mud puddles on the bathroom counter and such. I swear to you, I have had to scream, "Give me that effing hamster, he does not want to visit with the turtle!!!" no less than 50 times this weekend.

Jason has come to like hiding my pocket. I dry him off and tuck him in, he rubs up against my hand, probably trying to get the wet and yuck off, and then curls up in a ball to try to sleep while he has the chance.



 and I've started checking the cage before Goofy leaves for school. I really don't need that phone call.

To the reader I love the most... if there happened to be an anonymous call made to the ASPCA, I would understand. *hint hint* because I'm not flushing him.