My poor girl gives herself an angry pep talk when she spots the hated 10ml syringe I use to give her the 150ml colonoscopy prep medicine twice a day, “Meh-neh-SEHN, Reo!” Then she keeps the syringe so I don’t try give her more. Hasn’t worked yet. She’s even gagged over the weekend when she had to take some. For two days, I tried to move onto the maintenance mess but nope, she is still too full so I had it go back to the colonoscopy prep medicine. Two doses when the first one did NOTHING.
It’s 3am and she’s just come into the bedroom. I woke her father up.
I have suffered a lot during the day. I can definitely say it was the worst fatigue and pain of the year so far. I needed to sleep but how? I have five children who all need guidance of some sort. If I leave my 20 year old to watch over them or do school with them, they all end up irritating each other. He’s quiet but with them, he’s really irritating. I have to intervene when he is the problem. It’s like I have six angry toddlers with my daughter far away but also constantly texting only when she has problems or challenges or complaints.
Did you know that six children are draining for a sick mother?
My friend asked how Sjögren’s impacts me. This above is how. I don’t know if I’m having an AS flare, or if it’s Sjögren’s which in many places, doesn’t have a treatment option at all! It too comes with fatigue. So, am I tired, bone tired, “I need to sleep”’tired because of an AS flare, or is it this? The pain? Is it this? Or an AS flare? Or both?
Gynae gave me tablets to insert. You don’t need it only for intercourse -not happening here cos I do NOT want to catch some disgusting disease and I am too disgusted anyway to want it with Mrs Radebe’s sugar daddy, but you can get tears down there and more infections than normal. And cervical smear tests will become painful as the lack of moisture causes atrophy and narrowing. Fun times. On the positive, my test result is perfect.
My jaw hurts and clicks like it’s a door with a broken hinge when I’m eating. Only the left side. It’s distressing and loud. Loud like the snaps and cracks when I move my bones.
But anyway, it’s the severe pain and extreme fatigue that have me dying. I couldn’t finish the children’s lesson planning yesterday. There is also more to do because my son can’t keep up with any curriculum, cannot write even with the dysgraphia handwriting curriculum which has really helped Amarissa. Maths is dead. So I’ve stopped the dyscalculia-friendly Maths curriculum and have asked their father to buy one with Vitality points (the ones he uses to buy his floozy furniture) on the 15th. Which means it will only arrive next month some time.
Typing is tiring for him. Makes sense. Even his OT report said he not only has low muscle tone, but also low muscle strength too. And it’s not flowing well. And this is typing one word answers or at most, a sentence here and there! How do you help a child who literally cannot function academically? He forgets where the letters on the keyboard are even when he’s just used the letter! How do you help a child whose brain is that broken? I wish we had special needs homeschool curricula. What I now do, is look at the textbook and find worksheets that match what he and also Amarissa, should have mastered by now (For age 4 children!!) and print them.
More standing. More pain.
Amarissa can see it early in the day; the sheer fatigue and pain I’m trying to hide. She often asks what’s wrong, or tells me I “look exhausted” but my asking her and her sister for peace, rest doesn’t translate into helpful action. They still come often wanting this and that. And because they make EVERY thing including their vision therapy resources the behavioural optometrist sends for practice and which should go back for other patients to use, I keep everything here in the bedroom, though Amarissa is always quick to come take things without permission.
I’ve emailed the behavioural optometrist to ask if I can replace one of the boxed activities and to apologise for that loss and a set of work she’d put in a file. I just feel so BAD! I hate making people work more. I know the frustration of having to start all over again because my children destroyed or lost something that took ages to prepare, or cost money to get.
I feel like I am dying. My body is heavy and the pain is everywhere, even the groin where enthesitis has resumed. (Inflammation of ligaments and tendons where they attack to the bones.) I need physical and mental rest. Please pray for a miracle. I need rest. I need proper rest.
I made the mistake of googling one of the terms from my bone scan. “Syndesmophytes.” I am way too close to fusion. That’s in my right leg. Is that why sitting on the loo always brings crack sounds?
I can’t find any way to keep our non speaker busy and entertained during the day. Nothing that engages her interest. Even swinging her ends after maybe ten minutes. So she too is a whirlwind that enters the bedroom when I just really want to sleep. 3am or daytime, who cares? It’s a round of no rest day and night.
Her sister also does her version of tiring me out. She insists on doing more academics than planned for the day. And she wants me to listen. My body was screaming as she happily read many poems to me after returning from OT in the afternoon. And y’all long time readers know how the pain builds further in the day.
But yesterday! We all should know by now that autistics thrive on routine. They always all go into the shop and choose a treat when they go. That includes our non speaker. Usually they all choose and then pay using my card and we then count how much of their pocket money they’ve used up. But this time, Amarissa wanted cash.
So the question was, how will the aide manage them when they’re laying separately at different tills? I suggested they go with Vi so there’d be a bit more control at the till. They came back while I was looming for assessments -more on that just now – and our non speaker was screaming!!
I found out that they hadn’t let her go into the shop. Vi had kept her in the car. No idea why. She had been totally calm and not even c try ing from pain. So now, she was upset that she hadn’t gone in. Well, I figured she was. And she pulled me to go to the car. Yep, she definitely wanted to enter the store! So I asked my eldest son and Amarissa to go with her. Big Boy didn’t want to. “But we’ve done this before. She doesn’t stop crying even when we do do what she wanted.”
I told him to try any way.
And lo and behold! She returned home very happy and eating a treat.
Autistics need routine. And her routine is to go into the store like, and with, her siblings.
On the other side, her talking twin was overwhelmed -she becomes very sensitive and dysregulated when her twin has been crying and screaming. So a casual, “Where is the cat I made in my cat poetry lesson?” became a squeaky cry session. She wanted it and she wanted it now. But we’d looked everywhere for it over the weekend!
As her crying escalated and her poor eyes turned red and started swelling and her voice rose into a higher pitch, I offered to find her a new cat.
Thank God for The Good and the Beautiful homeschool curriculum! From Kindergarten to Grade 2, the textbook for Language and Literacy is downloadable for free if you can’t afford the physical copy.
Thank God for that free resource! I looked for the page in the 370 pages the textbook has, and printed it for her.
She coloured it in again, and I cut it out for her to fold up.
This was at the same time as her distraught sister. Talk about the brain whirring as it figures out why one is crying, and how to make them all happy.
Now, my Amarissa.
That was also the time I’d just been reading an email. It was an email from the principal of Perpetua House. I had asked for feedback information so I know if I can afford to send my girl there next year. (They only take kiddies who are 12 or older.) The principal sent me a brochure that was just a repeat of their website and didn’t give me any feedback information. But she also asked a question.
She asked if I’m sure my girl won’t manage to pass anything higher than Grade 3. That was a huge question. If I say no, am I guilty of limiting her? But at the same Ronex grammar, spelling, Maths, writing are a definite “She will never pass anything higher than exam even before Grade 3.” And as I noted, given it’s the educational psychologist who suggested it and she’s been assessing my girl for years now, she knows what those terrible results mean.
I’ve started warming our talking twin that her older siblings will one day go to a school for children who can’t learn like the oldest two can. For children who can’t write and think and can’t do Maths. Sadly , we have years of waiting for a public special needs school. And I can’t wait. But for now, I keep asking around in case someone with affordable private fees will take them. My boy wasn’t taken by the school not too far away, with affordable fees that he’d have fitted into.😔
(As I type in the early morning before 5am, the talking twin also joins the land of the needy, attention seeking twins. She wants the treats they got for her twin sister.)
It’s all just a lot. As the clinical psychologist said, I need a psychiatrist or psychologist for me. It’s already too much being a parent to multiple children with special needs (The messes they make, the laundry they cause, the mental exhaustion, strain, worry..) but educating special needs is its own very hard burden.
She was right. And it’s a burden this broken body definitely needs a rest from, just as my rheumatologist had said years ago.
I don’t know why I’m here living like this, but I don’t like being here.
And sadly, neither do my children, who the world and their neurodivergence challenge and assault them, like being here either.
They said I should write a book 