Advice please – Autism and breaking through the barriers

Hi All. I’m posting this one with a flat out request for advice. I’m stuck and I don’t know what to do for my son. (Surprise!! Should be used to it by now, no?)

Right now Colt is in a mainstream school. He has kids around him who have been in his class since they were all four years old. The kids in his class protect Colt, take care of him in so many ways, and always forgive him for the rules he breaks. He can walk up to one of these children, scream that they are a “motherfucking asshole” in their face, raise his hand and slap them directly across the face and they will forgive him. They don’t even tell on him half the time. They are wonderful, caring, accepting kids (most of them) who are enabling Colt’s very bad behaviours. The things he’s doing aren’t detrimental at this stage because he’s only ten. He weighs less than 90 pounds and he’s only five feet tall. In about three years, a slap across the face is going to be a fist and noses will be broken if we cannot convince him that violence is not the way to go.

I talked to him at length last night, as did his father (without raising his voice once! yay Dayne!) We decided to keep going the way we have been…talking to him directly, asking questions he can answer without supplying any easy answers he can choose just to get out of answering more questions. (Colt would admit to anything to get out of answering more questions and you’d never be the wiser.) We tried, last night, to explain the things he was feeling to him as best we could….also tried to explain how other people feel in reaction to his aggression/bullying of late. Sometimes I feel like I’m condescending to him, repeating things over and over that I’m dead sure he already knows but seems not to want to demonstrate. I try not to do that…he’s not stupid by any stretch, but here’s a little story to illustrate why the explanation seems necessary:

Colt, for years, has been bowel trained day and night (he still wets the bed nearly nightly although we’ve not gone back to diapers, we may do so as laundry is getting ridiculous). He has always eaten well and healthily and has never really had any GI issues so, his bowel movements have always been…healthy. (Sorry, I do have a point here) He has always been able to clean himself up after using the toilet and we never had any reason to revisit his techniques until one day, a couple years ago, when he had a flu that brought diarrhea. Colt got himself in such a mess one day in the school bathroom that the (then male) principal had to come clean him up (lololololololol…I hated that principal – he’s the dude who used to try to push me around and ended up calling the CAS on us after I wouldn’t answer his call one day when he called dozens and dozens of times through my office line while I was on a teleconference!!) Anyway, the douchebag had to wipe Colt’s ass, and I loved every moment of it. When he got home and had another messy bm and got into a mess so we had the chance to ask him what he was doing…why he was getting it everywhere. He demonstrated his technique for his dad. He pulled off a decent piece of toilet paper, wiped, wiped, wiped, wiped….smearing it everywhere. He didn’t think to drop the soiled piece of paper and take a new one so he was just redepositing it and getting into a huge mess.

“Ooooh, Colt!” his dad said. “Buddy, you have to drop the dirty piece in the toilet and take a new one when your poop is messy like this.”

“OHH!” Colt cried, sounding surprised and very relieved.

And that was that. He’s never had a problem again. Now, you’d think that sort of thing would be logical/instinctual but not for him…he wouldn’t have thought of that unless we directly showed him. So, we’re taking the same track with his emotions as we did with the poop. (giggles…this sounds ridiculous right about now. I’m so tired). We think that if we explain things better, he’ll fare better when trying to cope? I don’t know…maybe I’m backwards on this.

After talking to him, Dayne got the same story we always get. “X had a ball and I wanted the ball so I tried to take it but he wouldn’t give it to me and I got mad and swore at him then hit him”. It’s not a true story…it’s one that was true one time and it worked to explain why he did what he did so he’ll use it every time until he finds something better. When I talked to him using my knowledge of how to handle his dad in stressful situations, he nearly immediately explained that he wanted to play with this kid who is always so nice to him at recess. The boy had sat with Colt at lunch and they had fun…after lunch, the kid decided to play some soccer with some other boys and Colt wasn’t invited because he refuses to play games with rules. If he can’t direct it, he doesn’t want to do it. Because this boy choose his other friends over hanging with Colt, it hurt his feelings and the only way he could think of to discharge that hurt was by swearing at and hitting the kid. He was sad that his friend didn’t want to play with him…that was all. I get how that can hurt, especially when you’re different.

So my question to you guys: how do I explain to my son that it’s okay to feel these huge, big things that seem to burn in the pit of his stomach without having to lash out on people? How do I explain that, although he is well loved in this world, sometimes people will not want to dedicate all of their time just to him and, more importantly, that’s its okay when that happens? How do I get him to see that he will alienate all these wonderful friends he’s got by behaving in a hurtful, spiteful way? What are the words to describe these interactions?

I need help here. I fucking suck at being human. I don’t understand relationships and I have struggled with this part of life since birth myself. What are the words? If any of my autistic followers have ANY advice, I would sincerely appreciate it. (I do read your blogs every day, by the way. The bloggers I have discovered who are autistic have helped in so many ways by providing their perspective on the world in a way I could never have seen on my own).

Thanks.

Knew that would happen.

The moment I hit post I knew I was jinxing things. Not five minutes after I posted that last cheery update the school called. Colt is suspended for tomorrow. Spent the morning swearing at everyone (directly) and then hit one of the nicest kids in the school, in the face. Went for twice but only landed one punch.

Never mind then. Things are the same, apparently. So much for my smile. Guess today is not my day. Again.

Worst part is that the punch came shortly after he really enjoyed his Turkey dinner. :(

I’m going to sleep the moment Dayne walks in the door. I don’t even know what to do this time. Colt has a day off preplanned to,or row, has only one freaking day left of school and he couldn’t manage not to hit the nicest, most forgiving kid ever, in the chops. Colt says he wanted his soccer ball. That’s all. I can’t even talk to him right now.

Trying

This truly does deserve it’s own post without all my rambled complaints mixed in. There’s just so much going on right now in life and it tumbles together in my emotional mind.

So, Colt. As we all know, he’s been struggling this year. Out of (seemingly) nowhere, he started cursing like a drunken sailor and picking fights with peers. It seemed counterintuitive at the time but the school was so very persuasive and convinced that these episodes were entirely unprovoked, we ended up having no choice but to believe them, even though there WAS bullying going on that was causing a great deal of his frustration.

For the last two school meetings getting Colt reinstated after suspension for swearing/threatening teachers and students we have brought Colt along, rather than discuss things in private with his teachers and principal. It was always something we kept away from Colt, fearing he would feel even more of an outcast if he heard us agreeing with the people who were making his life so difficult with school work he didn’t want to and rules he didn’t want to follow. I think we actually did him a disservice there because the child never got to see us fight for him….disagree with the things the school said about him in efforts to make his experience more of an enjoyable one. After getting a dose or two of that and talking to him….sharing openly and endlessly how we were on his side, there to fight for him and not for any other reason, he started to trust us a little more. He’s been carefully opening up and telling us little things that are on his mind. It’s making a world of difference in bridging that communication gap between us all.

So this week, as I gave Colt his morning cuddle (I can’t describe how much I love that moment every morning. I went from a son who wouldn’t allow me to touch him to a ten year old who will go out of his way to give his mom hug, just because he knows how much I love it) we talked. I asked him to please try his best not to swear and not to threaten anyone…nothing else was asked of him. I told him we would forgive his mistakes and nothing he EVER does will cause us to stop loving him. I told him I’d do everything and anything to help make his life happy and all I asked in return was that he try, hard, to treat people with respect when he was outside of our walls. He agreed; promised; said he would do his best.

The week went by with no calls from the school. They had promised to stop calling me daily in a separate conversation so I assumed things were the same and not escalating, at the least. Colt came home each night and assured me that his day was “perfect” and I believed him, mostly. I figured he was swearing but not threatening people…which was enough of an improvement for a couple of days for me not to poke the teacher to find out for sure. He was very proud of himself though, and kept telling me how he had kept his word to me no matter how upset he got. I was proud of him just for that alone. Then, yesterday, my son came home bawling. He came to me and could barely get the words out.

“Mm m m mom? I’m so sorry to tell you this…but I’ve FAILED YOU!” and burst into tears anew.

He went on to tell me, with only gentle prodding, that he had broken his word and swore at one of the girls at recess that day. I nearly grinned with relief…I figured he’d been suspended for some horrible incident and all it was, was a single offense. I forgave him enthusiastically, along with Dayne, and we comforted him, thanked him for his very brave honesty and then followed through on the agreed punishment for such offenses. He wrote the girl an apology letter that he really thought about first and we restricted him from Thomas videos for the night. Done deal. He was SO relieved it was viable in his face.

This all led me to actually inquire with the school as to how he’s been doing this week and although there are little things they complained about, from our perspective Colt really, honestly, had a good week with very little swearing or rule breaking. He tried hard to accomplish this and the pride I already felt doubled in size. He’s trying guys. That alone means more to me than anything so far. He’s listened to what we said, he’s understood what we said, he’s understood the reason for the rules AND he has taken steps to correct the behaviour. It matters to him!!! That is freaking amazing….

He decided this week to change his ‘day off’ from Wednesday to Thursday because the school is having a turkey dinner he didn’t want to miss. The school worked with this well, accommodated the change and Colt trotted off to school this morning with his tummy rumbling for turkey and all the fixings. The turn around is…mind boggling. As always.

So my little love has one more day of school before Christmas break, I have the week between Christmas and New Year’s off and Dayne will be home for much of that as well. Colt isn’t grounded, isn’t suspended and has no restrictions. I happened to stumble on that incredible deal for the game system this morning and suddenly we seem like we’re going to have a fantastic Christmas! Dare I believe it? :) It just makes me feel lighter than air.

It’s all just as hard as it’s always been, but now that Colt is trying to understand and we are more successful at making things easier for him, it feels entirely worth it again. I feel very lucky right now. Things almost slipped entirely out of control….

Happy day indeed. I hope he’s having a delicious lunch right now, proud of the choices he’s been making. Even if he blows today and everything goes down the toilet, we’ve still won. You know?

*happy sighs* <—yay!!

Dreams, struggles and smiles

Well now. I’ve written a dozen blog posts and have them all neatly saved in my drafts file. I do this when I’m really struggling, I’ve noticed. I don’t want to post a week of misery so I read back what I’ve written and think “why would anyone want to read this crap?” aaaand draft. (Often goes straight to delete!).

I had so many dreams last night (this month) in my 13 hour slumber. They kind of stack on top of each other in my head when this happens and it feels like I’ve been dreaming for weeks, not just one night. I think it’s because the days keep going by and scenarios keep changing so I lose track of time passing. Well, that and I’m asleep…lol. So….kind of hard to be totally aware of what time has passed right? The dream I woke to was interesting.

I was dreaming that Dayne and I been doing something together that happened to take us by a place we used to live. It was an apartment that I “lived in” in dreams over several years and was a place I quite liked. It was safe…terrible things didn’t happen there like being shot at through open windows or having strangers walking into my bedroom in the middle of the night, as seems to happen with other (dream) places I’ve lived. I could see, from the street, that the place was completely falling apart. We had left this place and moved elsewhere about a year ago in real time. Always, in the back of my dream memory, I knew we hadn’t really finished moving…there was a TON of stuff we’d left behind and we hadn’t managed to clean up at all. I always felt a little guilty about that. From the street, I could see the windows were smashed and broken and the junk inside was overflowing. To my horror, I could clearly see dozens of orange pill bottles with my name all over them along with whatever medication they maintained. (In real life I’m very careful about who knows what meds I’m on. I don’t need that judgment working against me along with the rest of the crap I have to deal with.)

I told Dayne that I was going to sneak in and remove the pill bottles and anything else that had our name (despite the fact that the landlords would have known who we were anyway) and carefully snuck up to the side entrance of the house. It’s a triplex so two other neighbours lived there….one of whom jumped out and scared me as I approached. He was angry with me being there….it was our fault the place was falling apart because we’d left such a mess and the other tenants were pissed. They told me they were calling the landlords and the cops….I knew I didn’t have much time to work.

I slipped inside through a smashed front door and wandered around a bit, taking it all in. The walls and ceiling had collapsed some, leaving open spaces that let the weather in which caused even more damage. The stuff we left behind was just incredible…piled in corners and jammed into every drawer and closet. I gathered the old bills that came by mail, medication bottles, general stuff that had personal info involved. As I went through I kept finding things I loved that I hadn’t realized were gone; A dress I loved to wear in the summer, a cardigan that really suited me and I hadn’t seen for years, chargers for electronic devices we hadn’t known were gone. I found a video camera and some trinkets…at one point I was looking at these little bunny figurines that my mother used to buy me as a kid. I didn’t take those with me but stopped to think of her for a moment. I grabbed some plastic shopping bags that were lying in the mess and started to gather things I wanted to keep, not really understanding why I had left them behind. Odds and ends, memories, bits and pieces…I found a lot of things in that mess. Dayne arrived to help some and as he walked in he had the cats in his arms (we have two cats in our family who often make appearances in my dreams). He set them down for some reason and they ran to play in the piles of junk….I kind of scolded him for that, not understanding why he’d brought them in. We’d only have to find them and drag them back to the truck afterwards and we were short on time.

In the kitchen there was food everywhere. Food filled the fridge, cupboards, and counters, all either completed rotted or badly exposed to the elements in a way that made everything perishable. I piled as much as I could off to one side and then heard a big commotion as the other tenants seemed to be
making their way inside. I grabbed what I could, picked up one of the two cats and yelled for Dayne to find Daisy and we hurried back to the truck and drove away.

The whole dream left me with a sense panic…feeling like I was about to be ‘found out’ or caught for something I’ve been hiding.

When I woke up this morning I felt rested but uneasy. After my shower I woke Dayne up and his only words to me were:

“Do you have something you want to tell me?”

This is the line he uses when he wonders if I’ve been cheating on him. He’s never dealt with jealousy well. Because everything was fine last night I assumed I must have been dreaming something that involved someone other than him….in an intimate sort of setting. I sleep walk, I sleep talk, I sleep fight and scream and run. I make noises and my body does things…these are dreams and they happen nearly constantly while I sleep. They sometimes seem to be about one thing but sound to be about another entirely, plus, I’m DREAMING, not fantasizing. If and when I have dream encounters with someone it doesn’t necessarily mean what I’ve dreamed, I desire. Half the time sex scenes in my dreams are violent and forced…I tried to remind him of that without flipping out. What got me angry, though, was the fact that not a month ago I had real, tangible, reality based evidence that HE was not only looking at/chatting with naked women over the internet, he was actively seeking someone in our area to go fuck. He swears he didn’t go through with it and I forgave him. I didn’t guilt him over it. I didn’t sit him down and yell at him or make him feel terrible…I didn’t even fucking bring it up until HE accused ME of doing something similar based on nothing but his own shitty mood. I was mature, understanding and forgiving. I kind of spat that in his face right away and he instantly backed off, apologized and dropped it. Damn straight. I wasn’t about to put through the wringer over a dream.

(Whew – lil burst of anger there! All better now.)

My day got happy when I got to work. The therapists (one bunch of them) got me a lovely Christmas present and a card….in the five years I worked with the execs I didn’t even get a “Merry Christmas” in passing, let alone a card. It touched me so deeply, that they cared enough to do something so sweet for me.

Then, I happened to glance at the buy and sell board here at work. I found a Wii console complete with controllers, nun-chucks, steering wheel and a handful of games that someone was selling for $150!!!!!! Colt has been dying to get a game system for years but we’ve not wanted to put that amount of money into something that will only serve to distract him more. Now that we have better controlled rules surrounding video game play (on his Ipad, currently) we considered buying a system for him this Christmas, but in the end decided to spend our money on a pile of little things he will love to unwrap and enjoy. Then I come across this deal….I beat more than two dozen people to it and was the first to respond. I took it sight-unseen. It’s only two years old…. :D Colt is going to be SO surprised! He’s been doing an amazing job at school these past couple of weeks so it’s well, well, well deserved. I think I’ll write a separate post about his accomplishments and trials since the last suspension incident. :)

So. Happy day indeed. I have a smile I can’t wipe off and it is so, very welcome.

Friday

I am trying to make it through today with a smile of some sort. It’s going alright. I woke up this morning and thought about that nice man I chatted with earlier this week. I put my feet on the ground and told myself (out loud) that today was going to be a great day! I even managed a grimace-like smile as I hobbled to the bathroom for my shower. Shit is not working right in this body of mine. My knees don’t work in the mornings now (well, they do but with a huge amount of stabbing pain, cracking, snapping and sudden, involuntary weakness that tends to make me collapse if I’m not holding onto the walls). Smiling (ish) still, I did have a nice hot shower….which I regretted as soon as I got out. lol. It’s a comedy of errors, me in the morning. So, out of the shower, sweating like a freak, I couldn’t cool down to save my life. I gave up, pulled my clothes on (god that feels terrible when you’re all sticky and hot) and then froze the entire way to work because it’s freezing outside and I was … damp. Blech. Okay, seriously, I KNOW there are worse things in life but somehow the overheating/sweating really gets to me. Thanks Menopause. Well, super early peri-menopause, that is. I’m not sure I want to know what it’s going to be like when I actually hit that mark and am no longer in the ‘peri’ stage….

That whining aside, the pain I’m in today is … how do I describe this without over exaggerating? It’s just…awful. :( Every time I inhale my chest moves (duh..) and pain shoots through my rib bones, my collar bones, my shoulders feel as if they are being pulled from their sockets…my neck and back ache and then I breathe out and the pain is amplified as everything returns back to it’s normal, fucked up position. I have that panicky feeling that you get when you can’t get a good breath although I know I’m breathing fine, just have explosive sparks of pain each time I do so. You can breathe through pain so at least I have that going for me right? Yayyy… *sigh*

I did have a nice chat with Colt’s teachers today, which is rare. Every time I see that school’s number pop up on my call display my heart feels like it drops about three feet. I always try to put a bit of cheer into my voice anyway. “oooh Hi! How are you doing today?” I’ll ask as if I have no idea why they are calling me. I don’t know why I do that…maybe just wanting to put them at ease a bit so they don’t feel so bad about telling me how terribly my son behaved on that particular day. I’m way too nice to people sometimes. Anyway, good chat. She said they had held their collaborative meeting with all of Colt’s teachers, principal, learning support teacher, the ASD planner person for the school board, the school psychometrist (who probably hates us now for getting her into trouble over the ‘asd program closure bs Dayne started) and his EA. Really, I think the meeting was mostly about how they could cover their asses and be sure they didn’t leave any gaps to fall through, but…whatever…at least they met to discuss what to do with him. They decided that they will no longer be calling me every time he mumbles a swear word (yayyy!) and will deal with that in the moment. When he swears AT a student, swears at a teacher (my boy has balls. He doesn’t care who it is … much to my chagrin) makes a threat to swear at a student or teacher, actually threatens a student or teacher (wanting to watch the school burn down is his latest little gem) he will be sent to the office to write lengthy apology letters to whomever he offended. If he actually threatens harm or physically hurts someone, he will be suspended, as per norm. I’m more or less okay with that. He needs to know that there are different levels of ‘not okay’ or he’ll forever be mixing it all up together. Mind you, I’ve pulled him out of school every Wednesday to give him (and the school) a break from the constant battle and had hoped they would work with me so he’s not suspended every other freaking day. The LST actually told me that if they suspended him every time he broke the rules it would happen every single day. That didn’t inspire much confidence, but again, whatever. It’s always been this way, dealing with the school.

So what comes next? I don’t know. They’re going to carry on documenting every time he messes up, which is already a long list they’ve been squirreling away. I’m not sure how obsessive documentation will do a thing for Colt but they sincerely tried to pass it of as being done for him. All it will do is compile a nice, neat file of wrongs that they can lean on when they want him out for good. It sucks…but, there’s little I can do about it. There was a little leeway in there for Colt because I’ve told the school he’s been diagnosed with Tourettes (something the psychiatrist said to kind of keep in our back pocket). The behaviour has been so off the charts lately though, I had to say something. We are all hoping that Tourettes has something to do with the outbursts, mood swings and aggression.

At least it’s Friday hey? I don’t even know what that means anymore, aside from being the day before I can get a bunch of extra sleep. There’s a Christmas party tonight…the only one I actually wanted to attend this year, but I don’t think I’m going to go. I’m really uncomfortable and more or less wasted on narcotics. I can’t drink anything with this load of venom in my system so I’d just stand there, uncomfortably wincing and overheating until it was time to leave. No fun. Would rather be passed out on my couch, wrapped in my warmest blanket while I sweat and toss and turn until I fall into stressful, anxiety ridden dreams.

What is the point of my life again? Hmm? Sleep/work/sleep/cope with disabled son and inadequate support/sleep/work/cope with crazy bosses who make me feel like shit/sleep/toss and turn in pain/sleep/wake from nightmares/sweat/sleep. Can hardly freaking wait to move from ‘working in agony’ mode to ‘lying there in agony’ mode. My couch is about the only place I want to be.

But…what the hell. It’s not a bad day, in the grand scheme of things. It’s already 1:30 and the school hasn’t called, I only have 2.5 hours left of work, I have money in my pocket and a hot cup of coffee on my desk. My boss doesn’t seem to hate me quite so much today aaaaand…well, I still really really really love my awesome new car. ? I guess that’s more than enough to be grateful for.

Well. Off to load up on more meds. See if I can’t get this breathing deal under control. Hope you all are having a great day! I’ll live vicariously through you guys for the rest of mine. ;)

Family in crisis. Ongoing.

There is a patient I just chatted with named Cleopatra. Is that not the most beautiful name ever? She’s gorgeous too…a lovely, young woman with a stunning smile. She suits her name perfectly.

The second person I talked to was a man who came by for his therapy. He was so kind to the front desk folks and made them all smile as he went by. I beamed at him from my office and he took the time to come in and say hello. I thanked him for brightening our morning and he gave the following advice:

“One day a good friend of mine gave me some advice that has always stayed with me. He said that when you wake in the morning, before you put your two feet on the floor, you can tell yourself that its’ going to be a good day, or a bad day. So, every morning when I get up, I put my two feet on the floor, give my little dog a pat, say good morning to my beautiful wife of 50 years, and then I tell myself that today is going to be a good day. You wouldn’t believe how well it works.”

Well. Isn’t that something?

I needed that this morning. Last night I stayed at work until 630 or so, trying to get a jump on … lol …err catch up to where I should be, and when I got home Colt was sitting at his desk writing letters of apology to those kids he swore at yesterday. There were more than a dozen (which I think was a bit much…he didn’t swear at each person individually…they were in a group, but, whatever. It made an impact for sure. He spent the entire night writing those things.) Dayne and Colt talked quite a bit before I got home and he told me that the root of it all was that Colt was feeling ignored and wanted to be the centre of attention. I’m not so sure that’s the entire story…Colt will say just about anything when confronted and if you supply an answer, even if you do so carefully, he will grab it and swear it to be truth. Dayne has a way of asking Colt questions and supplying the answers he’s looking for. He doesn’t mean to do it, but it happens all the time. He likely asked if that’s what happened and Colt went for the easy answer…yes. Once Colt agrees, Dayne hangs everything on that particular answer (which often exonerates Colt entirely – a trick I’ve seen him pull for himself many times). I talked to Colt for a few minutes and then just went to sleep on the couch when he went up to bed. Dayne and I didn’t talk at all. There was too much stress. Dayne hates his job, is stressed to the max about Colt and his situation at school, is stressed about the pain I’m in and the emotional fragility that is showing in my face these days. He’s mad at my doctor for being so dismissive yesterday and he’s worried that his entire world is falling apart. It’s a lot to deal with, I know…I’m dealing with it all too, including having to carry the pain along for the ride. When I get overwhelmed I get anxious, depressed, exhausted and it comes across as bitchy at times. I’ll be the first to admit that. When Dayne gets overwhelmed he gets angry and starts lashing out in all directions. When he goes to that place, every little PTSD light in my brain fires up and I’m even less able to cope.

So. This morning, I woke up and thought to myself, “omfg another day” (see note above from my new friend who starts his day with a smile. It seems ludicrous when I factor in my life but it certainly won’t hurt to try) I had a shower (something was seriously wrong with our water – it smelled like it had been sitting in the pipes for a long, long while. I was worried I’d smell like it but I’m pretty sure it’s just my over stimulated senses picking up on something). I put on a very minimal face of make up because it was hard to hold my arms up long enough to do a decent job and then woke Dayne up, asleep on the couch beside me. He woke and instantly started in on it.

“I don’t care what happened yesterday. The school is going to have to assume some of the responsibility for the way Colt’s acting! They let him get away with everything and it’s caused part of this problem!”

He’s talking about the half a year he had a crappy teacher who didn’t make him do a thing. Just let him play in the back of the classroom when his EA wasn’t there every afternoon. He is clinging to that as if it had some sort of profound affect on Colt’s ability to cope with his school environment. He is constantly looking to shift the blame, even when it’s not being placed on him. *Well* Some of it is placed on him….Colt learned to be aggressive from somewhere and it most certainly echoes his father’s outbursts….but I didn’t go there with him. Just let it drop.

“Oh! I forgot to tell you!” He continued as I walked away, trying not to rise to the bait. “That Cathy you seem to like so much is a liar!”

Cathy is the school board psychometrist and she has been involved in Colt’s education from the very beginning. She is the one who pulls me to the side and gives me info that the school doesn’t, like when the teacher is not following the IEP or there are issues between staff….the real dirt that affects Colt’s education and the way it’s progressing. She is candid, honest, open and I value her help tremendously. That said, I realize she works for the school board and over anything else, has their best interests at heart.

“What are you talking about? How is Cathy suddenly at fault here?” I asked, trying to keep my tone as light as possible.

“Well she told us at that last meeting that the ASD program in the school we wanted to place Colt into was losing the program and was to be closed in the next year. I called up Bob (a principal from a different school that Dayne once did some security/network work for through his job). His two kids are in that school and ADS program and when he heard what Cathy told us he freaked out! He said the program was just given more funding and that he was told his kids placements were safe for several years.”

“Oh god Dayne….” I tried to choose my words carefully. “I didn’t hear her say that at all. Are you sure that’s what she said?”

He was overtaken then by anger and began to yell.

“SHE DID SAY THAT! I HEARD HER WITH MY OWN EARS!” He bellowed.

I was immediately exhausted and felt the life drain out of me. He went on about how she was full of shit and how they were all trying to screw us and now that he found out that the school was not, in fact, losing the ADS program he was going to push this all the way to the top and…and…and…

I interrupted to tell him to please stop. I don’t think Cathy said any such thing and now this principal who is taking Dayne at face value is going to dig into this. It will cause a huge upheaval and everyone will get all involved and at the end of the day it will boil down to an accusation; then everyone who was at that meeting will agree, Cathy didn’t say anything of the sort. At this point, we’ll look like idiots who, once again, made a big deal out of NOTHING. I cannot tell you how many times that has happened and it’s humiliating every single time.

The thing that bothers me the most is that I am the one left to clean all of this up!! I am the one who gets the daily phone calls from the school, the one who attends the meetings and tries to battle for our son in a realistic, mature, advocating way…not by hurling accusations that mean nothing. I’ve busted my ass trying to keep things moving forward between the school, Colt and his father. I try to keep Colt focused and in control of his own behaviour from my fucking OFFICE, for crying out loud. An office where I’m getting in trouble for not being effective enough at my job, mind you.

As he yelled, I shouted over top that I didn’t care anymore. I said that he was welcome to do whatever the hell he wanted from now on. I asked him to remember that I am the one who has to deal with these people, not him, so if he was going to go around burning bridges and slamming doors, HE could start doing all the leg work involved in keeping everything together.

Walked out. Drove away and went to work.

I’m at the end of my rope guys. I wonder if the Tourette’s is causing some of this for Colt…I don’t know enough about the syndrome yet to fully understand. I guess that’s what I’ll spend my awake hours doing this weekend. He is overwhelmed, unhappy and cannot stop swearing at people.

Now, the issue with the grade 8 girls…that seems different to me. They are mean to him and likely deserve the title he gives them. That kind of thing makes sense to me. The fact that he just started going off and screaming “Fuck you! Fuck all of you! You’re all fucking bitches!” at the top of his lungs the moment he got off the bus? I have no clue. Maybe he’s being teased mercilessly? Maybe he’s trying hard to fit in and everyone is ignoring him? But why all the screaming and swearing? I wish he could tell me so I could do something to help. When he and I talked last night I didn’t give him crap about everything.

“Mom? Do you still love me?” He asked in a quiet voice.

“Colt, nothing you ever do will make me stop loving you. Not for one second, no matter what. I promise.” I said. “Do you know what you did today that makes me so sad?”

“Yes. I was mean to Emily.” (the angel daughter of our wonderful sitter who has loved and helped Colt along since they were four years old).

At least he got it. I heard that he apologized to her countless times yesterday, on the bus, at the sitters in front of her mom, as he left for the day with Dayne. I think he realized he’d hurt the one person who is always on his side and always there for him. I’m not sure that it matters to him all that much but he got it.

This is all just so much to deal with at once. I want to help Colt more than anything and I don’t know how. I’ve never known how. I want to shut Dayne up and make everyone do their part so I don’t feel like a lone soldier out here, battling an army and losing ground so fast I can barely stay standing.

My doc looked at me yesterday and said “So…how is your mood?” … my mood? Hahahahaha….who fucking cares about how I feel?? I’m just trying to survive here. I’m in so much pain, my job is stressful and anxiety inducing, my son is turning into a jerk and my husband wants to blame everyone, even when it makes absolutely no sense to do so. Honestly, that I’m not at the bottom of that deep hole of depression is remarkable. I think I’m going on pure adrenaline at this point.

My mood? It’s shit. I’m not allowing that to register though or I’ll completely fall apart.

Outcome and more of the same.

I woke up this morning with a teeny little spark of hope in my heart. I had a doc’s appointment today and although I have learned not to hinge too many hopes on the outcome of any one appointment, that stupid teasing sliver of hope sometimes makes its way through. I hoped that she might have an idea this time that would make me feel better…or, at least, allow me to be more or less conscious for Christmas so I don’t sleep away my entire break.

The break is causing stress at work, by the way. Because I’m so behind, the bosses would rather I not take the week between xmas and new years off. But…of course! Why would anything work out in my favour? Stupid me.

Anyway. I went to see my doc. I even wrote a quick blog post about how great she could be at times, before I left, but it didn’t have much substance so I deleted it rather than post. I drove there, leaving at 930 this morning, and arrived right on time. The lot was full (it’s always full) so I had to park against the building, but I was happy to find something none the less. I walked in and sat there for ages, as always, and by 1100 she finally popped into the exam room.

I am the worst for hiding my pain, both physical and emotional. I could do just about anything while in pain and do on a regular basis. I can hide emotional chaos as well, unless I completely dissociate, so more often than not, people don’t think I”m suffering. I simply do not present like someone who is. It causes a lot more trouble than it fixes. My doctor knows this…I made sure she understood way back; so I expect a bit of familiarity when I see her, sort of. I forget that this doctor barely reads her patient’s charts and that nearly every appointment is like you’ve never met her before. She doesn’t call with test results, doesn’t follow up on anything at all….she doesn’t even read the damn clinic notes she gets back from her referrals. I was open and honest…told her exactly how much pain I’ve been in recently. I explained the headaches and the nerve pain, the sciatic issues and the constant need to sleep. She jumped on the sleep part.

“Hmmm when’s the last time we did blood work on you?” She asked. “I wonder if you’re not low in something like B12 or Iron?”

I nearly asked her if she was joking.

“Ummm, I think it’s the meds that are making me so drowsy…is that not a fair assumption?” I asked.

She shook her head no and screwed up her face in a weird way designed to demonstrate the stupidity of that suggestion. The fact that the labels on the bottles clearly state that these drugs cause drowsiness must not mean what I thought they did…. (sigh). So, she’s sure it’s an imbalance of some sort that’s making me so tired. Not the constant pain, stress and general crappiness of life. The fact that I need to lie down every two hours to stop my neck pain from building into a headache of disabling proportions likely has nothing to do with it. She told me to go to the nurses room to get my bloods done and then asked me to make a follow up appointment for January. I nearly cried but didn’t, then followed her orders.

The nurse came in and tied my arm off, then poked at me with her nail dozens of times. She couldn’t find a vein (even though I could clearly see one AND I’ve had blood done a gazillion times in my life and have never had a difficult time of it). She tried both arms and just gave up. Now I have to go to a lab to get them to draw it….I’m not sure if I can do this at work (hospital) but I’m going to go check to save me the time which I do not have. I wasted three HOURS this morning on that. Nothing.

She is going to leave me with no medication changes or adjustments until January. She is not making any referrals or suggesting anything at all until she has a chance to review my chart and read the notes from that jack ass orthopod who laughed at me in my appointment for not being severe enough for him to treat. I didn’t bother asking why she’s not read the damn thing yet since it was about a year ago that I saw him. I made my January appointment and walked out, tears stinging my eyes, but I didn’t cry.

I drove back to work feeling hopeless, as I often do when leaving an doctor’s office. I got back here and picked up my voicemail. One from the not crazy boss giving me shit for something I forgot to do and the other was from Colt’s school. Those tears crept back up when I heard the teachers voice.

This morning, I hugged my son and kissed his cheeks and told him to look forward to his day off tomorrow all day long. I asked him to please not swear at anyone and he promised me he would not. I suggested all sorts of distractions for his brain (looking forward to pizza for lunch at the sitters tomorrow, planning the fun things he wants to do on Minecraft when he gets home…etc). He got a good night’s sleep, was in a good mood and promised that he would be good all day. Apparently, “all day” only meant until he got on his school bus. By the time the five minute trip was completed, he had verbally attacked Emily, the beautiful little soul who is the daughter of our sitter…the little angel I love so much and who loves Colt beyond words. He called her a “fat fucking bitch.” (Heart breaks into little bits that scatter on the floor). He then got off his bus and started threatening everyone and swearing non-stop. The threats ranged from wishing the school would burn to the ground to wanting to hurt his classmates (it’s actually worse than that but I can’t bring myself to type it all). He went off on his teachers and EA and pretty much made it a bad morning all around.

Great.

I’m at a loss. I was going to take him out of school completely between now and Christmas but I don’t know if the sitter will take him or if we can afford full time daycare. I don’t know if his anger will just carry onto the sitters house (She will not tolerate that and he’ll be burning a hell of an important bridge if he does). Worse, if we take him out, it will be hell making him go back. I’m afraid he’ll see that bad behaviour as a means to an end and we’ll never manage to get him educated at all.

My head hurts so much my vision is fogging at the edges. My neck feels like a stack of jagged shells slowly crumbling beneath their own weight. My shoulders hurt and my back from middle up is drum tight, aching and painful with stinging tendons and nerves. I’m stuck here until January with no hope of improvement unless something spontaneously heals or vanishes. I guess that’s not so terrible…I’ve been in pain a long time now. One more month won’t hurt aside from delaying treatment. I don’t even think there IS treatment out there for me anymore.

All I know is that I can’t just keep going like this. The longer I struggle to hold on, the worse things seem to get. Now I have nothing going for me at all. If someone could just pull the plug I’d slip away so happy to be gone.

I want to be gone. Not dead, exactly, but I want to shed this pain filled body and run away from everything and everyone. Maybe a 30 year coma. That would be lovely….I could work things out in my dream world and live there just fine. The scariest of nightmares seem pale compared to this bullshit. I don’t even know what I’m struggling to obtain anymore. Life will never be normal, let alone good.

This all feels so pointless.

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