How are Things?

Tag: autism

  • Wednesday 23rd July 2025

    Right, well, here we go. No jazz concepts to calm the soul tonight my lovelies.

    My son has special needs. He can’t spend his summer at Summer camps as so many places won’t cater to him and he thinks they are rubbish in any case. So, there is a scheme where you can hire a qualified person to come to your home and take care of him, for a maximum of 40 hours over the total summer. It is a tiny thing but it is there. You fill in a form, you send it off, you get approved, you’re good. My son has a favorite person who has come to us several summers in a row, and it was all going like clockwork.

    She asked me today about the form, and I should have received confirmation way back in June about it. And I didn’t. I hunted through the items in my inbox, and on my desk, and true to form, there was the fubbing form untouched in the envelope his school had sent it home to me. I think I got it late April but maybe May, and had all of that month to send it in and then June as well. And I ruddy well forgot!

    I now owe this woman three figures that she has more than earned and I have to hand it over straight away, as in, tomorrow. How can I be so stupid? My first reaction in such moments is that I’ve discarded the right to live, I’m so stupid. And I have no one else to blame!

    There was a dreadful moment last year, after we were evicted and living in a city center flat, where I let getting the electricity set up go too long. It was absolutely my fault, I just let weeks go by and didn’t do it. Then they shut us off, and I had to get it back on pronto. It meant paying a reconnection fee, and dinners for my son in McDonalds. I was lucky, I still had a membership fee at the gym so we could go for swims, take hot showers, lunch in town… I was privileged. But it was completely unnecessary, just being too delicate to deal with the realities of life! Lying in the dark that night, I felt that a lesson of life had been shown to me; suffer the pain of practicalities or suffer a greater pain in their absence.

    And yet here we are again! Things sliding off me like algae off the side of a stagnant pond; why am I so stupid?! Why?

    I am supposed to be amazing everyone at work regarding my marvelous skills, and I’m honestly wondering if I should be here at all. What a waste of flesh!

  • Thursday 10th July 2025

    A confession; I am as white as boiled rice. The sun and all its works wring me out more thoroughly than linen on a washer board. Yesterday saw me moving across town, until I gathered my son and two of his friends to go see a movie. It went well, which was a relief; as a boy with autism friendship isn’t a certainty. But getting home by 6pm with the weather in the 70s saw me drained far beyond my capacities. I made dinner, and then I tidied up, and then I felt myself more empty than a dry gas tank. I was in bed by 8.40pm, and slept hard until 4am. I want to call it moral decline, but honestly it’s sadder than that; it’s old age.

    Today, with all my hours of sleep behind me, I still felt exhausted. But up and at it, at 5am. Not all things got done, but all things were attempted, even when I wanted to give up.

    I even managed to have lunch with my sister. We rarely if ever get together. Her daughter, my niece, has been through hell and back, and now has had her long term partner break up with her. The weight of the sadness I know she is going through… The gift of today was seeing my sister again, though. Salads and chats, and catching up. Plans and hopes for the future, especially when I thought once it might never happen.

    Afternoon, I had my online session with my counsellor. We talked over the week, my exhaustion, and possible plans for change. I have sought out so much change recently that I hesitate. I doubt myself. I would love new pastures, but only if they’re pastures, not battlefields. I want everything to be All Right. Which of us don’t?

  • Tuesday 8th July 2025

    I woke at 5am for some reason believing it to be Saturday. My brain is craving release. I managed to get up today and get some work done, then took my boy to art camp. Yesterday saw me hunt for him in the car park. He is 13, not a big deal, but today they ensured that no child from his group would be let out without a parent coming to pick him up. Of course I was the last one there, so I managed to cause a lot of delay for all the teenagers minding the place. Lordie.

    Today was the release of the brand new, all shiny, will-solve-everything financial system in my workplace. This thing will, and I quote, see the institution hopefully do away with lots of administrative staff. It was supposed to roll out at 9am. That became 1pm. At 2.30pm there was no sign, and I had to collect my son and make it home to work from there.

    At home in the afternoon, maybe it was the coffee, maybe the consciousness of the extra needs of my son, but I was alerted and somewhat agitated. I got as much done as I could by 5.30, then made dinner.

    By 6.30pm I and my son were online, playing our very first round of Dungeons and Dragons. The DM is a friend from work and there was a third person joining us. My son finds it hard to regulate his excitement, even his voice, so I had to tell him to ease up on the volume a few times. This was enough to see him upset, thinking that I was making him feel left out. Maybe I was. The truth is that I have no friends, no activities and no hobbies other than this, and the chance to do something, anything, just for me, is rare. And he didn’t like it. I hope we get to do it again, it was a good space for my brain to be in.

    And now, the laundry is out of the machine, the clothes are laid out for tomorrow, and I will be at my computer by 6am at the latest to see if I can sort out the financial issues of my unit. Talk to you then.

  • 18th June 2025

    Good evening, all. Another day is done, and the sun has set. This day has been hotter than normal, a dry, unblinking heat setting over the city and into the suburbs. My son is approaching the end of his primary school education, and to celebrate the school takes children on what they call a Leaver’s Tour. It means that I had to collect him an hour later than usual, a short vigil in the car while trying not to fall asleep.

    He’s on a high right now, as his last report card from his school was full of praise for the young man he’s become. They worked so well with him. He had struggled at his previous school, which had been a private, fee paying school. They had despised his outgoing ways, and loathed him even more when he received an Autism diagnosis. That is not an exaggeration: the overly fussy principal had shook her bob and said, “Sorry, he’ll have to go,” when I presented the recommendation report. When I had demanded his right to remain, they made the rest of his time there punative in an effort to force him out. When covid had arrived, they were almost gleeful.

    That was a very hard time.

    Getting the diagnosis came after the end of a personal struggle, and one day I will give the full report of it. Then the school he eventually went to came about after a long search online, then contacting them, and then a near magical walkthrough where my son found it amazingly comforting and positive. They were everything the other school wasn’t, a nearly rosy glow of support after years of outright obstacles. He thrived there.

    And now he is moving to a new school, a secondary school near our new home that has an autism support dog, a unit he can retreat to, and a full range of classes that will work with the skills he has, rather than the skills they feel he should have.

    For a short brief moment a few weeks back I listened to his father. That happens when I feel vulnerable or unsure. The subject options outside the core were Art, Graphic Design, and Geography. His father, paranoid due to Trump and a need to hope for chaos, wanted him to take Geography. For some reason I listened to him, the man who at every stage made the worst possible decisions. When my son realised he would not be taking Graphic Design he was horrified, and I realised what I had done. I had listened to his father’s fears, rather than ask myself what was right for my son. I put the question to his current school as well, and they answered immediately in the affirmative; Art and Graphic Design. His skills there are above anyone else they have ever seen. There is no reason to do otherwise.

    I have contacted his new school to make the change, and they rang us on the way home from my collecting him. I’ll confirm the details tomorrow, but hopefully I will never listen to his father again. I am vulnerable, perhaps, lonely and feeling uncertain about myself. My experiences in work and in other areas mean I would like support, and when that happens I fawn, and bend, far too much. I asked myself today, though, what it would be like to be back with his father.

    Then I snatched up the facecloth on the side of the sink and screamed, three times, into it, only stopping when I realised that screaming didn’t help.

    So what have we learned? That making decisions based on fear is always wrong. And that I have a vulnerability right now, in that I would like more assurance about my decisions. It will make no impact on me at all, as when I think about having a relationship I become very, very angry. But the need is there. Even the sturdiest trees sometimes need support.