Weird, how a week or two ago I was filled to the brim and overflowing with stress and anxiety and this week? Total turnaround.
If you didn’t read the posts and wish to spare yourself, I wrote three posts; one about how stressful my workplace is and the bosses that make it all the more difficult; one about my son and his disabilities – looking forward to the future and having his abilities retested and so much raw reality hitting us all at once; and finally, there was a post about family, my general health and the stress connected there.
A while back, the bosses were eating me alive on a daily basis. I had many days that I ended up in tears in my office, scrambling to get everything done. I worked many free hours, and was ultra exhausted, trying to keep up. Dayne had some very late nights at work so I was stuck being the only caregiver for Colt and that made it all so much harder. I used the time to clean though, and wow did I ever get this house clean. Last week I ended up being the on working late and Dayne picked up nothing at all so it’s all still sitting here waiting for me, but my back is hurting so much today I don’t think I’ll bother. Small burst seem to work best.
Anyway, the bosses. Boss number one, the aggressive one, lost a close family member at the end of last week. Not only did I take over everything I could for her, the support team and I managed to attend most of the meetings, rather than cancel. It was hard and I had a lot of my own job to do, but in the end, it all (mostly) got done and she thanked me so sincerely I nearly fell over. One of the other coordinators and I went to the viewing on Friday together, through the day so it would no be so busy, and the hug this boss gave me was so real. She held onto me when I tried to pull back….that kind of hug. She whispered in my ear a thanks for keeping things okay at work and for letting her take care of life without worrying about the rest. This is extremely unheard of with this woman..she is the Queen of Micromanaging and spends half her time checking over every task everyone else does just to be sure sure sure it’s all as she’d like it to be. I got over that years ago, feeling untrustworthy and like she was hunting for mistakes, but she let go of everything and handed it over to the three of us, my colleague, my other boss and me to take care of. Mind you, when she comes back on Tues there might be hell to pay but I was there at the right time and to me, that’s what I’m proud of.
This department that reports to her had a conference last Wednesday that went off really well. The staff loved it and even the catering was great. My boss got a call on her personal cell mid way through the event to be told about her family member entering the ICU and she left the conference, letting my colleague and I run the show until it was over. The one thing she did before she left was awarded the “Staff Recognition” awards we hand out each year. They nominate their colleagues and we usually have one winner and two nominations that had enough votes to be considered ‘runner-up’. First runner up…as expected; a staff member who has had some amazing achievements over the last year; becoming an associate professor at the medical school, heading a few very good studies and authoring several papers. Second runner up was being announced and the boss was doing her little slide show thing, highlighting the great things done by this person, when I heard something about Excel and HR stuff….welcoming to new staff, a dependable, knowledgeable and talented person who went way above and beyond to ensure the program was run like a well oiled machine….and then she called MY name. I was in the middle of jamming a nanimo bar into my face, camera ready to take a photo of the winner (I was the photographer for the event) and I barely knew what to do. The place erupted with cheers and applause, like I’d just been nominated for an Emmy and I gratefully accepted my certificate that was delivered with a GIANT hug from the boss. I later discovered that she had pushed my nomination up so I would win. **here come the floods of empathy** It was the next day her family member passed and then all of the previous info happened so, for now, I feel very lucky to work with the team I have and I feel deeply appreciative that the boss went out of her way to make sure I knew I was respected…even by her.
There was another entry, some time ago, about the second boss, the passive aggressive one, who came into my office mid-morning and tore me a new one after she got bitch slapped by boss number one. She took every drop of frustration out on me, reducing me to sobbing tears, trying to calm down and remind her of how much work I had been trying to keep up with. It was all over an unscheduled meeting, by the way….and not an urgent one in the least. She did apologize…twice that day and then we met to discuss how to work better as a team. She’s been pretty understanding since then and delivered a flower with a card the following week thanking me for all I do for her. She wrote that she realized how she sometimes forgot how much I do for her on a daily basis and wanted me to know I was appreciated and she was very thankful to have me supporting her in any way possible. It mended fences. Nothing else has changed in my workload, aside from making it less possible to accomplish, but the gestures were appreciated very much.
So. Work is okay again. For now. I have no expectation that things will go perfectly but the fact that they both went out of their way to make me feel appreciated (whether it was a plea to not turn them over the HR or otherwise) helped greatly.
The best part of last week, even though I was working nonstop for up to 12 hours a day, was that everyone in the department of staff who pretty much hate boss number one, all cared enough when she suffered a family loss. It’s been said over and over again … she’s a crappy boss, but still a pretty good person. We ended up collecting over 500$ for her – some went to a gorgeous flower arrangement for the viewing and funeral, filled with flowers from the country the family originated from. The support team and I went in on a gift certificate to a lovely nursery so she could pick out and plant a tree or flowers in her garden in memory of her loved one. The rest has been transferred to a pre-loaded VISA card so she and her family can donate to whatever charity they wish, in whatever denomination. There are five cards I’m collecting on Monday filled, inside and back, with messages from her staff. She’ll feel loved….that one is for sure. Many, many people went to the viewings and it felt like family; in fact, the flowers we sent had a card attached that said: With love from your (Department name) family.
Just that moment of watching so many people drop their grudges to reach out to a fellow human in need melted me. I’m so proud of the team….she treats a lot of them rather poorly in the workplace but each of them recognized the pain of losing a loved one and wanted to be a part of the healing we were trying to provide her.
We’re all the same after all. Under the walls we use to cover our fears and the behaviours we adopt to do the same, we still all love and with love comes loss. When people rally together to support one soul who has lost another….it’s pretty magical.
Update on Colt coming up next…..
I have been running around my house at all hours of the day and night, trying to get a photo of a blue jay couple who live in one of my back trees. Blue Jays, for those of you who are unfamiliar, are actually kind of nasty birds….they’re the bullies of the bird population around here. They steal nests, rather than make their own, and there’s forever some kind of scuffle outside in the leaves between a bird, squirrel, or some other tree-dwelling creature and one of these Jays.
I thought they were a mating pair until I saw them together the other day….both have the same bright blue and white markings though. It’s rare for female birds to have showy feathers here….so maybe they’re using the power in numbers theory to overtake the hard work of other creatures who have made nice, cozy homes for themselves in our trees. They’re beautiful though and I wanted to get a shot of them starting the day I got my camera in the late winter. Last weekend we were all leaving the house when Dayne froze on the porch and whisper-yelled for me to get my camera and get the heck over there. I did, but I had the wrong lens on so I had to juggle lenses around and try not to catch the attention of the beautiful bird sitting on my front lawn. I finally did get a few shots off, struggling to focus on my subject through my telephoto while trying to hold the camera stead, balancing on the edge of the front porch. It was nearly a face-plant sort of day for me and my camera but…..after many blurry attempts….I got it. One of the two, anyway. Next goal – both jays together.
The rest of it all (with a bit of pretty at the end).
Dayne’s father died a few months back and he’s never quite rebounded. He was there with his dad right up until he took his last breath and was the only one in that messed up family able to make the hard decisions that needed making. It was emotionally raw and tragic for Dayne and he fell apart in a way I’d never quite seen before. It scared the crap out of me, honestly, as Dayne is the strong one. He’s the one who protects us all and keeps us safe from all physical and emotional threats out there. To see him down was terrifying.
If you read previous posts (there are a lot I just drafted and didn’t publish so I’m not sure exactly how much I’ve shared here) there was a renewed engagement with his half sisters and step mother for a brief period as they united in their grief. I was worried about the expectations that were being hinted at….that we would be in close touch with two sisters I really don’t much like (for many reasons, most of which involve their treatment of Dayne for all of their lives) and that we would be starting to visit his step mother. I make no secret of my distrust and general dislike of these people (to Dayne, of course, not to them directly) but I told him I was willing to take part in whatever he felt he needed….whatever what he thought was best for him and our son. I reached out to them all after George died and was either rebuffed or was sent a long list of complaints about how Dayne wasn’t living up to their needs. He did try to offer them as much support as he could, even going to visit his step mom on several occasions, but they all started up the same old bullshit and the lies began to pour from their mouths.
The step mother said one thing about George’s belongings and estate to Dayne, another to the sisters. We were told everything of his was gone…sold and given away so there was nothing left for Dayne. The sisters were allowed into the house to take whatever they wanted of their father’s, provided the mother wasn’t wanting it. George had a lot of computer and electronic things that Dayne would have enjoyed playing with and/or just having, knowing his dad had treasured them, but it was not to be for him. In the end, all he asked for was one of his dad’s work shirts, a portion of his ashes and his old, favourite coffee mug. The shirt was given to his sister, the mug is nowhere to be seen and the ashes are being held for ransom at the step mother’s house. Dayne is struggling between trying to do what he knows his dad would have wanted and to protect himself from more pain delivered by the hands of these women who spent so much time hurting him.
As it stands right now, we have nothing of George’s and we’re not sure that anything at all will come our way. Dayne is making peace in his own way but, seeing the outright terror in my eyes at the suggestion of making these people a part of our inner circle and having them become actual family, he’s not really talking about it much with me. It’s hard. I want to be there for him (and I am) but he wants to protect me. He wants to talk to his dad or his best friend, both dead and gone, about these things and not lay them on my lap to deal with along with the rest of our lives. I’m trying to support him in every way I can.
Work is stressful for him too and he brings that home too. It’s too much…all the stress of his work, my work, Colt’s future, his dad dying (and grandmother shortly thereafter, although, Dayne’s mother insists that she was NOT his grandmother as he is NOT her son). Throw in the medical soup I’m currently swimming in and we’re overwhelmed. I just want to find a way out of this for all of us….run away somehow and not face all this stress day after day. In the end, we mostly sit and don’t talk about these things, choosing to treasure the precious moments when we can be a family without death and work and disability and disease clouding everything over.
The narcolepsy is sort of under control for me right now. Stress makes it worse so yay me….*sigh* The nightmares are not as bad and the sleep walking has slowed dramatically since taking a sedative at night to make me crash. The Modafinil is keeping me mostly awake through my days but the stress at work is making me feel like I’m going to have a freaking heart attack if I take my afternoon dose through a stressful moment.
The arthritis is making me want to rip my entire skeleton out of my body and stomp on it until its gone. Spring is hard. I’m in so much pain I can barely stand it some days. My spine, neck, shoulders, neck, jaw, face and head are never quiet and even when I up the pain meds and anti-inflammatory meds I only get the edge off long enough to have my entire focus on it all day. It hurts to sit, stand and lie down. I have seriously limited mobility in my neck and just….owww. Everything hurts. Everything inside, everything outside. Nerves are screaming down my arms from my shoulders, through my face from my neck, down my legs from my lower back. Double sciatica and a funky new foot drop that accompanies has made coping with the rest all the more fun. I need more meds to keep this under control but the pain meds are sedating which throws off the narcolepsy issues and I end up stressed, heart pounding in my chest, exhausted, nearly falling asleep on my feet and in so much pain I can’t even figure out what to do to relieve it….even for a moment. Luckily, the night meds keep me down so I don’t wake up every five minutes in pain…..that said, waking up is dreadful and takes far too many moans, groans and agonizing movements for someone my age. My spine feels like it’s all bone-on-bone from the very top to mid shoulder and then I have two particularly painful areas thoracic and lumbar. My doc wants a new MRI but I’m not too anxious to get it done. I know the drill by now….I do the tests, they look at them, they say “woah that’s a lot of degeneration for someone your age” and then I’m told I can either up my meds or cope. I don’t really get to up my meds without worsening the sleepiness, which is already freaking terrible, so I just go on, as I was, just with more pain.
So hooray. I’m tired; still dreaming; exhausted; stressed; worried; worried about Dayne; worried about Colt; worried about work; in pain from head to toe and basically just living from day-to-day because I don’t have a good enough reason not to.
Now, time to sleep. As long as I can keep the depression at bay, I’ll make it through all this. The good news is that we bought a gorgeous gazebo for the back patio and it is up, decorated and feels like an escape from everything out there in the shaded sunshine. My photos are keeping me going – some are so beautiful they surprise me. That’s a wonderful thing to be thankful for. Dayne found me a photo printer and surprised me last week so I’ve been running it dry for days. I’m going to surround myself with images I love until something changes and I can let go of some of this horror I’m dragging around with me. Here’s a few I put up at work to help me remember the good in life:
My son, Colt, is about to turn 13 and is on the Autism Spectrum – mid to low functioning in areas of cognitive ability and social skills. He’s going to be in his last year of elementary school next year and we’re buzzing around, trying to get all the necessary testing done through all the different resources to ensure we apply for the right and best suited route for him to enter high school. This is just eating me alive…. First, he won’t be in the same school as any of the kids he’s grown up with. They protect him and know him so well….his classmates accept his disability and they all go out of their way to accommodate his needs. He is loved, cared for and about and he feels he belongs there…..and it’s all going to come to a crashing halt when he enters the high school system.
Now, I know this boy like I know my own heart and I am not letting test results dictate the way I feel about him or the future I hope he might one day have, but wow guys…his testing is not easy to digest. Communication is terrifyingly low….he is testing at the 1st percentile for receptive language and he’s not even on the chart for expressive. This means, essentially, that Colt understands almost nothing that is said to him unless he has a reference point from the past that dictates an appropriate response. For example, when we tell him how much we love him and how much he means to us and our little family, he knows that it means something good. We are sharing our hearts with him and letting him know that he belongs and is loved and needed. His developed response to that is to engage us in the same way. He tells us he loves us too and repeats things he’s heard before like:
“I will love you no matter what.”
“I will always be here for you and will always sick up for you when things get rough.”
“I will fight for what is best for you and for what makes you happy.”
“You mean the world to me.”
“You are perfect just the way you are.”
“I carry you me in my heart everywhere I go.”
“The best part of my day is when I get to come pick you up and take you home.”
“I will never stop loving you.”
He echoes the sentiments we’ve tried to get across to him for his entire life and he knows that they mean good things….they mean we love him and accept him. He repeats them back to us because he feels the same but doesn’t know how else to say it.
At school, there are clear expectations. He knows exactly what he is supposed to do and when he is supposed to do it. He’s had years of visual schedules and (hard fought) EA’s to help guide him along. He has people telling him exactly what he needs to do and what the consequences are if he doesn’t comply. He chooses to do the things asked of him only because he’s learned that things go much easier and happier when he complies. To me, this feels like he’s learned action and consequence and the importance of doing what he is asked to/needs to do in the world – as far as the tests are concerned, it means he’s just learned to parrot back the responses that get everyone to leave him alone the quickest.
I KNOW he’s learned a lot. I know he has empathy (something many autistic people struggle with) in spades and he’s learning how to cope with it and use it to help others. He takes pride in doing something kind for someone else. He cares about his dad and I and goes out of his way to do things to make us happy or to lighten our loud. Right now, I can hear him in the kitchen asking his dad how work was and when Dayne provides a short “it was fine” answer, Colt probes for more.
“No dad. How did things go at work for real? Did anyone make you feel happy? Frustrated? Was your boss in a good mood?”
He’s trying. Right? He’s trying to connect using the tools he’s learned through people trying to connect with him. That’s how all humans do it….just maybe a little more on instinct than Colt does. He needs to be shown exactly how something works before he understands it. He needs to be given the tools. If he’s asked a question he doesn’t know the answer to, he bursts into tears. If he’s asked something he can connect a memory to that turned out well, he defaults there.
For most of his life, he has clung to happy experiences. The first Christmas he can remember has been the default until the last few years. He asked for certain things (not really understanding, but we knew what he favoured and enjoyed playing with, of course) and he was delighted when he got to open presents that contained amazing things that made him happy. Every single Christmas to follow, he asked for an exact repeat of that first one. He wanted the same toys, the same books, the same experience. It was just the last few years he’s been able to expand his requests to include new interests. Shit, we’ve only been able to get him to be okay with a Christmas tree in the house for a few of them. (TREES DO NOT GO IN THE HOUSE!)
So, I’m stuck, staring at these reports and tax forms (thank you Ontario Government for taking away all our disability tax breaks by the way) that read so dismally, telling me that my son is “profoundly disabled” and that his is in danger of harming himself because he may appear to understand some very important instruction you’ve given him, but really, it’s just gibberish to him if he has no reference point from the past.
As a mom, I want what’s best for him. As a mom, I had hoped we could enroll him into the ASD program at our local high schools. They have a system where the kids go to regular classes, pickup their work and then may choose to go to a specified quiet room to get assistance from an EA. Colt is nowhere near that level of independence at school. He can barely complete a simple task unless someone is directly beside him, guiding the process.
Test results don’t show his emotional and personal growth. Test results do not define his abilities and the things he can do now or might be able to do in the future. I guess the fact that I hate so much to face, is that things are not normal for him. I mean, we know this….of course, but we have established a nice little routine that works and we love this child exactly as he is. Sadly, I’m not sure he’s going to fit into cube the school wants to shove him into and he’s going to be put into a program that doesn’t benefit him and his potential. Then again – I couldn’t care less if he graduates high school, goes onto to continue education, gets a job as a deep-sea diver or barely manages to hang onto a paper route throughout his life. I just want what is best and I don’t know what is best and it eats me up.
Day by day, I suppose. We’ve never had the benefit of being able to plan very far into the future for Colt and it’s nothing different now. I guess we just keep going on instinct. So far, we’ve raised a considerate, sweet, loving, strong, opinionated, polite, kind and beautiful boy…..we can’t be doing all that poorly. Everyone who knows him loves him and he pays it back tenfold. If we can just help him through puberty and into adulthood, who knows what he will be able to do. Once, he couldn’t tolerate the sensation of grass on his bare skin and now he independently rides a riding lawnmower all around our property, shifting, lifting and dropping the blade….he even parks the thing perfectly and safely. The tests make all his gains feel invalid or wrong…but they’re not. It’s just a matter of getting our head’s around it, I suppose, and getting over our own terrible fear of change for him. He actually adapts better to life than I do….lol.
I thought it would get easier, being his mom. I thought knowing him better and having him able to express his thoughts, wants and needs to me would help. It did help….does help…but I still don’t know what the hell I’m doing. Just hoping against hope that I make the right choices for him until he can make them for himself.
We meet with the school in June and will combine all of our reports and test run by them, his psychology team and by us from the perspective as his parents. They will let us know which stream he can apply to join – the ASD program or the other one that will focus more on life skills and safety. I guess we’ll know then, what the next few years will look like and can go from there.
To end on a lighter note – at his last meeting/session with his psychiatrist the doc asked him what he wanted to be when he grew up. Colt paused, panicking a bit, unsure of the answer. He looked at me for some help and I smiled….told him he could pick anything he could imagine in his head as being a fun job to do. His answer?
“Yeah, you know, I was thinking I’d just live with these guys and not really have to go to work that much.” with a thumb over his shoulder gesturing back to where his dad and I were sitting.
Dayne laughed and said he was welcome to stay forever, but as far as a job went, cutting the lawn every weekend could count. lol.
Is it weird that I wish I’d had more kids so much and am simultaneously so relieved that we stopped at one? I wish he had siblings but I also love the fact that he gets all of us and every drop of love we have in us (and there is a LOT of it, when it comes to this magical little boy who is rapidly outgrowing his clothing).
So. There’s that part. Onto part three….
Where shall I start?
Well, first, I’ve just arrived home after throwing my hands in the air and leaving work 30 minutes early after a terribly unproductive meeting with one boss who couldn’t get out of the room fast enough, after having spent an entire day in meetings for them (FOR them, not with them) and then got back to a smiley bitchy boss who, oh so kindly, told me that everything in last fiscal year’s info on workload measurement was fucked. This is a point of contention between me and my bosses. I am tasked with ensuring the staff are accurately capturing their workload which is reported to the Ministry of Health (who allocates our funding in this socialized healthcare system we hold so dear in Canada – and SHOULD, mind you, in my humble opinion). I accept this willingly and I’m very, very careful when I audit to ensure we’re accurately reflecting the right numbers so that we don’t suddenly get our funding decreased. I happen to like a great deal of my coworkers and really have no desire to eliminate their job because of an entry error. Now, one would think it would be their accountability to ensure they are entering their numbers correctly but that’s an argument with one boss and a bitter point with the other. They like ME being the accountable one. Okay….I’m alright with that. I really am. It’s a part of my role and it has to be done by someone so I really, honestly, truly don’t mind spending three days slaving over the numbers to make sure we’re not missing anyone or counting things twice thanks to some student or new staff member….it’s all good. But here’s the catch: I have way too much to do in the rest of my job to get even half of it done on time and I have to drop everything to audit once a month. Logically, the bitchy boss tells me this has a simple solution…..just don’t do so much work for the second boss and audit twice a month. It sounds great in theory, until applied to boss number two (who actually does a lot of her own stuff, knowing the venom of number one).
Stopping. Breathing. Focusing.
The point here, is that it’s a shit-ton of auditing and I can barely squeak out a freaking bathroom break in my day, let alone a full half month audit. I go in early, I sit down at my desk, I work like a fiend, occasionally eating or drinking something one of my awesome coworkers brings me out of fear that I’ll die of starvation in my glass cage of an office (okay, a bit dramatic. I do bring food and have the ability to make tea so I’m not totally their prisoner) and then I look up and I’ve missed my lunch and it’s suddenly time to go home. Actually, it’s almost always 30 minutes after it’s time to go home. I only leave because I have to pick up Colt….seriously. If I didn’t have that to do, I’d likely be there until the next day….every day.
I’ve had so many meetings about this in my three years there it’s sickening. They KNOW i’m overloaded. They admit it. They tell the staff not to talk to me because I’m too busy to even say hello (yes, seriously, that is a standing agenda item on one of the staff meetings). The two bosses HATE everything I do for the other so it’s a bit of a game between who I tell what and Heaven help me if I happen to get dragged into a project for one and then don’t have the time to listen to the other one complain about their day while I’m trying like mad to get payroll in, audits done and my ten page to do list started. I have 300 unopened email in my inbox. Of those, I have something to do with about 90% of them (add this to that list or move this to that folder or change this to that schedule or budget this to that cost centre etc etc etc). Every day at least ten people say to me:
“Did you get that email I sent you?”
I smile. I answer. “Probably, yes, I’m sure it’s somewhere in there.” and just hope they go away.
Everyone understands. The staff are amazing….they constantly rally behind me and try to make a difference but the end issue is that my bosses aren’t really just assholes who want to take advantage of me, they have no funding allocation to help me. I know this because I do the fucking books too.
So back to today – The one boss came to me and informed me, smiling but not really, that ALL of her *particular stat I shouldn’t mention for confidentially* are WRONG for the last fiscal year. Funny thing that. The stat she’s talking about is audited monthly by my predecessor who only came back as a casual after retiring to help me out because she felt so bad about leaving me with that mess of a job. I don’t know what the hell is happening, but I know it’s not her. This puts me in a bad spot because I have to tell the bosses that she is the one doing the audits. I don’t want them blaming her because ultimately it’s my responsibility to ensure it’s all done correctly. So….I get to have a meeting with them so we can sit down, go over the audits (for the tenth time) and identify (for the tenth time) which ones absolutely must be done before the month closes so it doesn’t affect our budget. I’ll do it (for the tenth time) and tell them (for the tenth time) that the reason I can’t get them done along with the other 11 general and 200 staff audits along with the rest of my role for the two of them. And, we hit deadlock again…no funding. No help. No solution. I know it’s not them, but there is definitely an element in there that is me not fixing this problem. I don’t know what else to do but tell them, again, that I can’t do what they are asking of me and show them again the number of free hours I put in, trying hard to do what I can.
The mental health part of me that malfunctions here is that I feel like a failure when they are pissed off….and they are always pissed off. I can’t seem to get them to communicate and when I do manage to get them on the same page, they just start fighting against each other. I went from one, simple payroll system to two terribly divided systems with multiple issues and access points that is confusing everyone and they both insist that it is intended to HELP me somehow and get the timekeeping off my over full plate. Now, not only do I have a bunch of payroll to enter, I also have a half dozen timekeepers messing up everyone’s pay, asking me questions ten times a day (by email, which I can’t get to) and a whole bunch of irritated staff who feel like they’re being micro-managed. It’s chaos betwen those two. They don’t even have anything to do with each other aside from having to share me as an assistant so it comes as no surprise….just a lot more work for yours truly. I’m not even sure how I’m managing to get anything done, at this point.
And…..that’s just work. The rest of my life is still ongoing and I can’t quite find any solace there either. (to be continued next post…..)
I use photography to lose myself in moment of beauty and OMG I have just taken about 300 photos that are so lovely I can’t stop the slide show of them going over and over my computer screen. I usually only post photos to my photo blog, but these ones I wanted to share with you guys. I hope they bring you as much peace as they do me. xx
I need to write a post on a specific kind of meditative photography Birdie told me about last week. It’s AMAZING in concept and it echoes so much of what I already love about taking pictures. Will try to catch you up soon.