Dayne was an angel and left work early yesterday to drive all the way home to get Colt. They turned around and came back to town just in time to meet me at the Psychiatric Institute where Colt sees his psychiatrist. This man is amazing, let me tell you. We lucked out so huge when we found him.
Way back when Colt was 3 we started our campaign to get him onto one of the doc’s caseloads. It’s a self referral service, of course, because GP’s cannot mandate psychological testing (well, they can, but not directly to the institute…they’re the higher care body who is linked directly to the Ministry of Health which governs all of health care in Canada. Dayne and I nearly lost our jobs, we took so much time off rotating shifts at the Institute with envelopes bursting with medical notes and test results from Colt’s first three years. We begged, literally, for help and finally one of the docs agreed to take Colt on as a patient.
We only go a few times a year at this point but there is zero pressure from them to make appointments. They’re so busy they can barely handle what they have….but this wonderful doc, Dr. Rob, we’ll call him, went out of his way for us, again, and arranged to see us at 5:30 to make things easier on us. 5:30! The entire hospital I work in clears out 4 (aside from the nursing shifts) so a 5:30 appointment on a Wednesday is unheard of. Dr. Rob also sat with us until nearly 7:00 pm and when we left he wasn’t even almost rushing us out the door.
Sometimes we forget how good it is for Dayne and I to meet with Dr. Rob, thinking of his as Colt’s doc, not someone who will help us achieve our goals. He always starts by chatting with Colt about kid things…school, sports, superheros, whatever he can remember as being of interest. Then, he will ask Colt a series of questions and observes him as a whole, watching his tics and gestures, movements, eye contact, flow of though, logic…it’s really interesting to watch it happen. Colt responds well, tries hard to be personable and polite; it makes me love him so much too see. My biggest fear for him is that he stops trying. Then Dr. Rob will start discussing things with Dayne and I, asking how the school year is going and how Colt is doing. We generally relate all the BS we’ve endured from the school since our last appointment and he sits there and bats away the nonsense
“So what are they considering his behavioral issues to be?” He asked. “Does he scream or disrupt the class by throwing physical fits or items across the room at his peers?”
“Oh gosh no!” I answered while Dayne chuckled and Colt looked so bored he was about to pass out in the chair. “Basically, he refuses to do what they ask him. In the afternoon, the only expectation of him is that he remains physically present in his classes and they’re not even managing to do that.”
But does he swear? Spit? Get into physical fights?” Dr. Rob looked a bit surprised.
“No no, nothing like that. He refuses to do his work. If they push him he threatens to swear at them and then he’s sent to the office and I get a call to redirect him and his behaviour.”
“Well that’s ridiculous!” the doc said and all three of us smiled in unison. Isn’t it though? We get so emotionally invested in the school and the goings on there that we get lost in the issues and bogged down with policy and punishment (remember the times they suspended him for swearing on the playground but wouldn’t give him a student mentor to help guide him while outside in a huge crowd of kids? Dr. Rob was actually angry about that.)
We talked about the presentation they wanted to do for his classroom about autism. Dr. Rob asked me how that was going to help Colt. After several moments though, I answered that it wouldn’t. The kids in his grade and class are kind to him. They all know he’s autistic…..a presentation for them won’t help Colt in any way, in fact, the doc worried that it might make Colt feel under the microscope, like people are telling all his secrets to the whole class. I wrote an email this morning halting that presentation….I can’t believe I almost put him through that. I don’t think he would react too badly but really, what’s the benefit? Nothing aside from the school getting to say “We’ve done all we can! Look at our efforts!” Screw them. It’s been ME who drives this entire thing and has been me alone from the start. Even Dayne can’t be counted on to behave rationally.
Anyway….things went along like that and Dr. Rob told us to stand strong with the school. He said that if they threaten to take away his EA support (which means he’ll do nothing in the morning and nothing in the afternoon) to tell them we disagree, first, and second, that we hope they have a great plan B in place because Colt will be there until grade 8, regardless. There are no other places for him to go…
Oooh and the ASD placement they’re pushing to get Colt into…haha…we asked about that and Dr. Rob nearly jumped out of his chair.
“NO! No don’t allow them to push you into that! The programs are good, I’ve been over to see four of them in the last three years, but the kids who go there seem to be the ones who are a physical threat to themselves or other students or are extremely disruptive to a regular class or school.”
He says the minimal distractions, army-like structure and padded cool down rooms (closets with no window, just bean bag mats and a tiny little closet they lock the kids into when they freak out) are in place for a reason. Like us, he agreed that Colt spending time around children who are fall less socially functional than he is will only serve to pull him down and will teach him absolutely nothing about self coping or regulation. I nearly cried with relief at the sound of someone agreeing with me.
So we will not allow an application for the ASD classes. The doc said he has rarely found if effective for kids like Colt and I can stand on that, regardless of the pressure the school puts on. He also recommended that we have him reevaluated and have a new IEP designed. His hasn’t really changed since grade 3.
Then he asked about the swearing from last year. He did a few quick psychological test and pushed Colt (a bit) into answering more difficult questions than he is easily able. This caused an immediate stress reaction and his twitches and tics came out everywhere. I don’t think there was a single part of his body that was still throughout the session. At it’s conclusion, Dr. Rob announced that he believes Colt has Tourette’s Syndrome (it’s rather often found as a co-morbidity of autism, especially at Colt’s level of function). It’s not severe and could get better or worse with time, but he wants to add it to Colt’s overall diagnosis. He smiled when he said that it might help him keep his EA support through grade 8, at least.
After hearing that I very nearly cheered. I know that must sound so odd to most people, but the fact that maybe the swearing and strange behaviour that started last year was due to the Tourette’s starting up in his messed up little system. Knowing it might have a root cause relieves me of the fear that Colt is turning aggressive, surly and entirely lacks empathy for his fellow man. His frustration levels make much more sense that was too…..but that poor kid. Can you imagine the struggle he faces each and every day when he tries to “behave” the way everyone expects him to? I hate so much that he suffers that way. Any way.
We came away feeling a little happier, more empowered and refocused entirely on what matters most: Colt, his education and his happiness. It puts Dayne and I on the same page immediately.
As we were walking out Dr. Rob pulled Colt off to the side and got on his level.
“Hey Colt? I see a lot of kids here who need my help at school and at home. I’m really glad you come to see me too because you are a really nice kid with a great heart. Don’t let anyone tell you they’re better than you, because I can promise you that they’re not. Okay buddy?”
Colt offered a ‘fist bump’ and Dr. Rob happily bumped him back. I couldn’t have been more moved. Everything changed in that moment, settled down and refocused. We’re ready for the next hurdle now, whatever they try to throw at us, we’ll be ready.
Thanks Dr. Rob. I hope you know how much your help means to these kids….and their parents. :)
Dark nights, dark days. I seem to have lost my footing somewhere. Dayne thinks it’s because I was asleep for so long. I’m sort of in agreement, in part anyway. The more I sleep the more I get lost in dreams. The more I’m home and not at work, the more I sleep. I’m not sure what’s better for me most days, sleeping and feeling this way but with reduced pain physically, or being exhausted, stressed, overtired and in pain all the time. Nice choice to have to make every damn day. :S
This morning the sun came up in sepia tones. I have no idea why but the sunrise gave a full, muted-golden cast to everything as I was driving in…the bright reds, oranges, yellows and green of the trees in the dusty light made it so beautiful…like I was driving through an old movie. It was quite beautiful, and then became doubly so as the sun burst above the horizon in pinks and reds. “Red sky in the morn…sailors be warned…” ran through my head. It’s warm and humid today, in great contrast to the weekend when it was blazingly sunny but cool. Proper fall weather. I was sweating and cold, overheating and sticky….I hate the irregular way my body keeps temperature. I don’t know if it’s the drugs or me anymore. I think I might be nearing my period which would explain the sweats and general feelings of malaise. Yay. Why the hell not…..pile it on.
My dreams have been relentlessly exhausting. It is so frustrating to sleep for 20 hours and then wake up feeling like I need a nap. No joke, most nights it feels like I’ve just come home from work and then my alarm goes off. I get home from real work, sleep, go to dream work, wake, got to real work…it’s mind numbing at best. I’m so tired right behind my eyes I feel like I could fall into a coma and rest for a year with a smile on my lips (and terror in my head).
So. I’ve worked my butt off in therapy for years, like so many of my friends here have done. I sorted a lot of crap out and have come to understand so much more about who I am through the work I’ve done and I’m a much more stable, settled human being. The pain of the arthritis in my spine is another thing I’ve overcome, to a degree. I try not to give it much life by keeping it inside me while looking for ways to make it easier on myself. It’s not easy. Last night, Dayne was watching me sob across the room feeling helpless and hopeless and he tried to bolster me.
“Remember, the pain is only really bad in the winter. Just focus on next spring and things will be okay eventually. You’ve not been in a lot of pain lately…maybe it won’t be as bad as last year?”
What he doesn’t realize (and I didn’t explain because it’s terribly depressing) is that the pain hasn’t really altered much in the last months. There have been some low times, for sure, but most of the time I’m in pain. Most of the time my head hurts and my jaw aches. My eyes hurt….if I cry at ALL, I’m in a world of trouble. Two tears and I’ll end up with a crashing headache, sore eyeballs that swell and throb with pain, massive sinus pressure and a vertigo feeling that leaves me nauseous. Most of the time my neck hurts in such a scary way…I can feel the bones sitting at angles on top of each other and every turn of my head feels like it’s taking me one step closer to the time when I can no longer do so. The grinding feels instinctively wrong…dangerous. My shoulders and arms along with my upper back are always sore, always aching, always tense and strung out feeling. The weakness gets worse each time I check it so I’ve stopped checking. My lower back is also nearly always in pain. It hurts to sit and press the curve in it into pain and I can’t lie flat or it causes pain from the other side. At night I can’t lie on my sides because of my shoulders and arms (the pain is unreal. I dream of my arms being set on fire or being stretched by ropes until they tear off my torso) and when I wake, in pain and gingerly move to my back my lower back screams at me. I flip to the other side and sleep for an hour, then wake with stone arms and painful shoulders, flip to my front and my lower back screams at me. It’s ridiculous. I have round pillows to jam under my legs, lower, back, neck, torso….I have two body pillows to lean against so I don’t put too much pressure on my body…what I need, is to lie suspended in space so that there is zero pressure on my body. I’m looking into that. There’s got to be a sling or some sort of suspension device I could find.
The pain is the same even when I don’t complain about it. That was my point….I don’t like to complain in the first place, but constantly thinking about it brings it too much into real life and I eventually find I can’t escape it. The bad part of all that is that I’m so good at hiding it, folks think I’m not in pain anymore. That doesn’t help my case at all but I can’t think of anything else to try. So tired.
Dayne convinced me that it’s time to try another med. The ones I’m on hold me *just* at the point where I can function most days, as long as I only work my 8 hours and then sleep nearly immediately upon getting home. I sleep all weekend…wasting the hours away. In tears, I implored Dayne to just let me change things somehow so I didn’t end up wasting my last good ten years or so entirely on a job. Every ounce of energy I have goes here, into my office, where I can’t keep up. The pittance remaining goes to Colt, who deserves the lion’s share, and there is nothing left for anything else. It’s getting hard to justify.
So. I started writing. Everyone who loves me has been after me to write a novel since I can remember and I put it off and push it away, maybe afraid that it won’t be good enough in the end, maybe afraid it will be. I’m going to give it a try though. My time could be worse spent right? Maybe I’ll use my last year in the 30’s to write something that might allow me to back off on work a tiny bit. Maybe. There must be another way to supplement some income that doesn’t involve me busting my arse in a job that’s going to take years from my life simply from stress. Mah. Will see. I barely have the energy to think today.
Off to work. I have a shit load of stuff due by Thursday and I’m already behind with this short week. Wish me luck friends. x
Well here it is, the last year f my 30’s starting off with a bang. My computer is broken. I boted it up after a few months of no use (I’ve been asleep) and it booted fine, just fizzled out when i tried to open my desktop. It doesn’t look like windows…the drive doesnt even start. The fan whirs and the screen goes into sleep mode and nothing happens. All my fucking photos (again) are on that drive so i hope it’s not fried. The damn thing isn’t more than two years old. Maybe it got hit in one of those terrible lightning storms this summer. The house took a few shocks and the panel blew a few times (suddenly remembers a strange, metal/plastic burning smell that we never found the source of after a storm one day….). Crap. I was going to buy a new one, however,on my way out this morning the truck died. My car, sitting prone and immobile directly beside the piece of shit truck, is unfixable. Well, unworthy at best. The truck now being in need of repair only makes the bullshit smell so much sweeter.
So I can’t leave the house. And I can’t use my computer. The only two things I do other than sleep.
So. It’s my birthday. Colt gave me a hug and Dayne mumbled something at me this morning. I bought myself underwear and a cheap silver ring and….yay me. At least I didn’t have to walk home from town today. That would have super sucked.
Today is weirdly difficult for me. No one calls, no one cares and I’m a big girl now and Santa isn’t real so I should just shut the fuck up and go to sleep. Right? Might as well. It’s after 4 pm so technically evening. Down a beer, pass out, wake up for Dayne’s Turkey, cause it’s thanksgiving too. Oh so much to be thankful for. My health…oh wait. Mentally and physically fucked. How could I forget. My sons health and happiness? Nope. He’s miserable upstairs in his room because no one likes him. All the while the school tries to plot its way out of educating him. Family? Hahahaha.
I miss my mom the most today.
Fuck it then. Back to dreams of misery. At least I can occasionally wake from those ones.
I’m not sure what the point of all this is anymore. Things are looking rather bleak in my world and I’m starting to wonder why the hell I’ve been fighting so hard if everything is going to end up miserable anyway.
The last job that Dayne had was very hard on him. He worked for a small company who didn’t do everything by the book…Dayne likes to follow rules, do work properly and professionally…he struggles when things aren’t done on the level, especially if it’s just for financial gain for the company. He takes pride in what he does, no matter what it is. There was one woman who was a right bitch to him (and everyone) and she played stupid games like messing up his tickets and schedule, not ordering his parts for installation…that sort of petty nonsense. It drove him nuts. Every morning he would wake up and vomit from anxiety and stress. He did it for a year, trying to get enough time in for us to be able to get a mortgage but near the end he just couldn’t hack it. One day he looked at me and told me that he just couldn’t do it anymore; he had to get out of there. I worked hard with him to help him find another place to be and he took the chance he got.
He’s been with a new company for about a year. This place doesn’t do everything by the book, messes up scheduling and lies to it’s customers on a regular basis. Lately, they’ve been blaming mistakes they’ve mad directly on Dayne. Apparently, the entire sales force does this to the installation techs and project managers which is exactly what he is. The boss gave him hell yesterday because he asked Dayne to train his son (who works at the office and although he’s not qualified, his dad lets him do all kinds of work, leaving his actual team sitting around the office doing absolutely nothing) so he could take over a particular job Dayne’s been doing and he just flatly refused. Dayne doesn’t work that way and he gets so emotionally involved in his world that the personal injustice of it all is more than he can handle. He refused to train the boss’s kid, refused to take the blame for their own poor planning and was really angry when he came home. This morning I woke to him ranting at me about how he can’t take it; he can’t live like that anymore. He’s waking up every morning and vomiting from stress and anxiety. He told me he’s leaving….simply cannot take it.
I know I should be supportive here but…man, i just couldn’t do it. I fucking put up with that last job I had for five years. Five years of being mistreated, bullied, degraded and condescended to. I got their coffee, ran their stupid meetings and jumped when they said jump. I was in agonizing pain, depressed, anxious, having fucking flashbacks and desperately trying to work through it all while dealing with life. I did it for our family. I did it so we’d not all fall apart and lose the tiny bit of success we’d managed to scrape out of life. Dayne told me he didn’t want a life with someone on social assistance. He told me not to give in or give up. He said not working would be the death of me even though I felt like working as hard as I was would take the little I had left and leave me with nothing. I chose to keep working full time after finding out I maybe have another ten years (nine now…fuck…) to be able to function normally before my spine causes me to have to slow down. I fought through it all…it was hard. It’s STILL hard. Just yesterday he told me to apply for that old job I had…the staffing one. It pays a lot less an hour but it’s wonderful and I loved it there. The work was easy and I did it very well. The hours were wonderful, the people – decent as well. It would relieve me of an enormous amount of stress (this current job is impossible. I’m working 60 hours a week these days for much less pay) and would be so much easier if I could just slow down a touch…. Anyway. He tells me he’s going to end up leaving, quitting, getting fired…he’s not sure how it will play out. He says as long as he makes the pittance he made as his last unworkable job, we’ll be fine. So. Fuck me then. He’ll go ahead and find something better for less pay, be less stressed and I’ll just keep on destroying my body and my will to live and keep everything together for us all, like I usually do.
(Whine fest, I know. I’m just full to the brim of this sort of exhausting crap).
My car is broken and we’re not fixing it. I’m currently driving our second vehicle but it’s not a good one…we just kept it around to haul trash to the dump on weekends. Dayne drives a company truck so when he quits we’ll only have one vehicle. Not good. I tried to guide him into getting a new vehicle and job before he quits and he said we would. He’s just going to take a chunk of the small account we’ve managed to save for a down payment and use it on a new vehicle. Great. Whatever. I guess that will have to do. We have been desperately trying to find a way to buy a small place so we can give it to Colt when he’s older. From the way things are looking he’s not going to be able to support himself as well as we hoped. Mind you, that’s still pretty far off and you never know what might happen. Still. Need to be somewhat prepared.
Anyway. That’s the Dayne stress. He’s been really having a difficult time keeping his cool which has resulted in issues with the school, his co-workers…Sigh. If he can’t cope though, he can’t cope. Who am I to say anything anyway.
My son is threatening teachers with scissors. He has zero social skills, he is not progressing academically. My body is slowly failing me, my brain is messed up….my partner is lost and struggling. I want something different this time around…something new to happen, maybe even something good? I know I’m lucky that Colt isn’t sick with something that will kill him, that I’m lucky for the same, that Dayne is a good man and a good father. I have a roof over my head and food in my fridge, which is a lot more than I’ve had at some points in my life but the sadness and stress are so much greater now. Had I know life would turn out like this all those years ago I might just have given in way, way earlier.
I feel like I’m running on fumes. One day the sun is going to come up and I’m just not going to get out of bed. There seems to be no point. I’m too damn tired to fight for nothing…that’s really all there is to it. If Colt wants to threaten to stab people with scissors and Dayne can’t find a job that doesn’t make him puke each morning and nothing is ever going to get better, why would I keep pushing myself into an early grave?