Thursday 30 June 2022

Rebooting After the Infant Distraction and Other Beasts

     So, I don't know if anyone at all out there is going to read this after all the years away but it seems like it is time to reboot the career. After all, Hollywood is doing it all the time so why not me?

    For those of you who don't know, my name is V.J Bartlett, I'm a writer, artist and autistic and back in February 2016, I became a Mother.  This last one suddenly became my overwhelming, totally absorbing and oft times soul destroying full time career.  I did manage occasionally scribble something down while the infant distraction slept but other than that the Infant Distraction gobbled, sometimes literally, every scrape of time I had.  When they say you have to unlearn everything when you become a parent they are not kidding. You suddenly have a tiny life that is totally dependent on you and anything resembling personal space, free time and even self care is no longer an option. I did manage to check my personal emails once after the Infant Distraction was born, six months after he was born. I am so glad that it was emails, if they had been physical letters our recycling bin would have burst.  The only thing being that was the last time I checked my emails until September 2019 when the Play Group the Infant Distraction went to badgered me into looking for the activation email for the Tapestry account.  One thousand, one hundred and one emails later I finally found it.  That however was not the worse to come but before I go into what could be the worst I'll give a rough over view of what I went through for about three years that resulted in me not signing into my emails.

    In two words - Infant Distraction.

    I'll say that again - INFANT DISTRACTION!!!!

    Start with a birth that was any where between two and six weeks early (not sure because the midwives wouldn't believe me when I tried to explain I only have a fertile time once every two months) and became a rush to surgery because he'd gone cross-wise in the womb.  Just because that is the most common complication in labor doesn't make it any easier or less painful.  Hard on the heels of all that drama was the fact that the Infant Distraction had no suckle reflex so feeding was a nightmare.  And if feeding was bad then the other end was even worse.

    There nothing so damaging to your creative ability than when, having made it to bed only an hour before because you were hosting family and therefore had to put on the big, fake smile marked 'I can manage, I'm doing fine', you wake up to that ear drum piercing, nerve shredding, mind shattering shriek that marks the start of yet another three hour long colic bout.  I thought the loneliest place on earth was the crowded room where you are not welcome.  Then I experienced walking up and down in the kitchen, alone, at horror o'clock in the morning with the Infant Distraction screaming in my ear with colic while his Daddy tried to get enough sleep upstairs to drive to work safely the following day and his grandmother slept off her anti nerve-damage medication so she'd be able to help out the following day.  The most soul destroying thing is knowing just how painful it feels to have your intestines twisting inside you and there is nothing you can do to ease the Infant Distraction's pain but just keep walking up and down, up and down, up and down until it finally shifts itself.  The colic did finally calm down and then, the Christmas just before his third birthday, we discovered that he has a potentially fatal reaction to cows milks.  Six hours in A and E later we finally made it home at three o'clock in the morning Boxing Day.  Not what you could call a good Christmas present but I'm getting a head of myself.

    The Infant Distraction was thirteen months old before he started babbling at me, broke his first tooth after twelve months of teething and started crawling.  He was thirty months before he slept through the night once and before that, at twenty one months he spent five days in hospital with a lung infection that has left scar tissue in his lungs and an on going case of asthma.  Que six months of bouncing back and forth to hospital until the doctors finally allowed us to have he maintenance inhaler, rather than just the emergency one.

    So we were just about over his physical illnesses when the pandemic hit. The first lockdown wasn't too bad for us as the Infant Distraction had only been in nursery so he wasn't missing out on structured education. What he was missing out on however was socialization, which was to come back and bite us on the bum.  So lockdown ended and he was allowed to start school in September 2020. So I was just getting used to more time at home on my own, was catching up with the jobs that had been on hold for nearly five years or more in some cases, when I was called to a meeting at the school. The Infant Distraction had beaten up one his classmates and it was just the last straw in a list of behavior problems that had been showing up ever since he started.

    I went to the school expecting to have to fight tooth and nail to convince one of them that the Infant Distraction was some where on the ASD Spectrum and it turned out that the teachers were expecting to fight with me to convince me to let them refer him. After nigh on five years of being fobbed off by every so called expert I'd tried to get help from it was such a relief! However, we now have the fun and games of jumping through every hoop, sitting up and begging as well as rolling over on command to try and get a referral. I don't know if I am a trained monkey, a show dog or a lab rat. What ever I am it is demeaning and dehumanizing in the extreme, especially as, for a semi-permanent measure the Infant Distraction was put on a half week at school and a program of work to do at home started. Lacking any form of a formal diagnosis the program of work is pretty much socialize, socialize, socialize. So I'm not only filling the role of Mum, I'm also filling the roles of big sister, little sister and best friend. I'm supposed to minimize the amount of time he is left on his own and teach him how to play with others. In short, hot house his social skills. So not only had I lost the time I had to work on the jobs I'd also had to take on more work to act as teacher, classroom assistant and classmates. Then of course we had another two lockdowns so I had to take on doing his academic studies as well. I'm not entirely sure I'm still sane as added to all of that is the fact that in 2020 my Mother nearly died five times and none of them were covid.

     For a quick recap my Mother suffered a freak electrocution in 2000 that should have out right killed her on the spot but instead left her with a degenerative nerve disease of undiagnosible progress (i.e. the quacks know it is something to do with her nerves but they don't know what and they aren't trying to find out).  Then in 2005 the drugs the doctors were giving her nearly destroyed her liver and we spent eighteen months watching her bounce in  and out of hospital. Just as that was finally settling the news broke that her abusive eldest sibling was in jail for damaging his own daughter. Cue watching Pandora's box being opened as all the memories of what had been done to her came back to my Mother, all at once, all for her and she nearly drowned in it.  We even moved house, twice, while she tried to get away from the mental squit storm.

    And just when we thought that was settled we received the news that she had terminal cancer. Why the doctors think that, just because she has this weird nervous condition, it gives them the right to use her as a guinea pig I don't know but they did. The course of treatment they put her through was the first of its kind, parts of it we found out later were skirting the edge of what is technically legal, and it did put her cancer into full remission - at the price of burning all her abdominal vital organs and murdering three quarters of her immunity system. Let's put it this way the reason I married my husband was because he was willing to take me on as a care package deal with my Mum. You don't let a guy like that slip away.

    Even then it wasn't enough.

    My mum moved out to house share with a friend down the road in October 2019 because the doctors told us that she'd be dead by Christmas and we didn't want the infant distraction to be the one who found her blue and cold and stiff.

    Well the quacks obviously still don't know what they are talking about because she still here. Granted, as I said before, in 2020 she nearly died five times, none of which were Covid-19. First she had an abscess on her kidney that yielded about a pint of bright yellow fluid when it erupted through her back. She then had a bladder infection that was improperly treated the first time it landed her in hospital so she came home only for the infection to eat through a major blood vessel in her bladder and leave her lying on the bathroom floor in about an inch deep pool of blood (that's 3cm for those who don't do imperial measurements).  She had to have something like nine units of blood when we found her and sent her to hospital.

    After that the pipe from her central line for her dialysis took a migration, somehow passing through two chambers of her heart and embedding in her liver where it caused a slow bleed, a bleed so slow that she didn't show any symptoms until the resulting blood clot was that big it shifted and crushed two thirds of her liver out of existence. Finally there was the case of sepsis that put her in hospital for two weeks on the sort of antibiotics that either kill the infection or kill you.

    What is more I had to be her nurse because the district nurse could only make it once or twice a week when she was home and she needed nursing care every day, some times two or three times a day. Learning how to clean out pussy abscess wounds that smell awful and look worse...  well I suppose I now know the details I need to write a really convincing nursing scene. Why is it you only start crying after you've finished the job?

    So yeah, fun times. I can see why the Chinese consider it a curse to wish someone to 'live in interesting times'.

    I'm exhausted, heart sore and struggling to sleep at night. I regularly have a hundred or more jobs on my weekly list of jobs to do and it doesn't ease up as the holidays get here. Although a few jobs drop off more jump on and I have less time in  which to do them. And that was before the Government told me to go starve.

    As I have a child under the age for senor school Universal Credit promised that they would not be pushing me to find a job. However, at the start of 2021 I had to reapply of my PIP and guess what? I was refused. Apparently Autism is now a disease you can recover from, according to the Government, so apparently as they judged my Autism to be in remission I no longer needed their help to live. So a third of my income just upped and disappeared. Thankfully they have since allowed me to have it back but only until the start of 2025.

    Since I left school I have had one paid job, which was a cleaning job once a week. Other than that I have been a writer, an artist, a seamstress, a landscape gardener, house clearer, house decorator, cleaner, head chef, salad chef, dish washer, handy woman, under gardener, automobile valet, farmer, nurse, child minder, first aider, teachers assistant, teacher, child psychologist, baker, maker, road safety officer, groom of the stool, dog walker, pet groomer, nit nurse, cat boot sale organizer and maid of all work.

    BUT

    As none of those have been paid employment I cannot enter them into my CV and I have the added problem that I cannot drive. I'm barely safe on a bicycle, I'd be a serious accident waiting to happen behind the wheel of a car. The shop, the butchers and the two pubs in the village already have their full quota of staff so there is nothing available within walking distance so where else am I supposed to bag a job? Assuming I could ever convince an employer to take a chance on part of the autistic epidemic (not my wording, just the term used by some of the medical journals).

    So it seems the only way I have of making money is to restart the career. EXCEPT, I am still expected to continue doing all the jobs listed above, plus a few more, as well as restart the career. Time off has shrunk to one play session a week on an online game and other than that I don't play. Even when I'm watching TV I have either my sewing or knitting in hand to try and squeeze as much into each day as I can.

    Some how I need to do blog posts, Youtube videos, check my emails every day, restart my facebook account, set up a Tee-springs account and actually produce all the stuff so I actually have merch to sell. Do I see myself managing to do this? Well, it took eight weeks to write the first draft of this blog post and eight months to publish it.

    I'm doomed or insane or both.

    Also check out my artwork at V. J. Bartlett on DeviantArt and if you like it and want a commission of your own contact - bartlettforfans@outlook.com

    Please allow at least ten days for the first sketches as time is not something I have much of. I can grow thyme in the garden but it doesn't translate to the clock for some reason no matter how hard I try.