They said I should write a book

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.

I am not a Christian, according to the one fit to judge..according to the sugar daddy of an employed wife whose divorce he caused and helped draw up agreements for.

This very wise and very faithful man who clearly knows Christianity more than I do, has told me I’m not a Christian, he doesn’t know me, I’m not the woman he married. (A line I had used on him when I asked why he doesn’t live when he sued to preach when I fell in love with him.) And you know why? I’ll tell you why, because he told me why.

Firstly, I do not argue with my youths about their conclusions about the wrongs done at church. Their father used to preach against irreverence and dancing in church. They would go to church in the recent years when I became too sick to go, come back and tell me how there was dancing and the female music leader would castigate people for NOT getting up and dancing.

I am not a Christian, because I actually BELIEVED irreverence is wrong. He just PREACHED it but didn’t actually mean what he said. Because what other conclusion can one draw from his telling me that my saying, “Yes, that wasn’t good at all! And why try force people to go against their principles!? It’s not like David danced in the sanctuary so why should they expect you to dance in it and insist on it? What happened to free will?”

I am not a Christian because I didn’t tell my children that they MUST ignore the irreverence and disobedience. Our church founder is very specific about holiness, honouring God, conduct in God’s holy sanctuary. But he didn’t marry a woman who apparently CARED what the founder of his church said. And so he had to cheat.

Yeah, make that make sense. Except, I was even stricter than he was when we were planning our wedding! Our founder taught that true mental and physical health come from a healthy, varied plant based diet. I wanted no meat at all at our wedding. Nobody will die from not eating a dead animal for ONE meal. Alas, he said only we -wedding party -should be vegetarian. And I should allow my mother to buy meat for everyone else.

Yeah, somehow he forgot that I always tried to live by the principles of church I got baptised into! Interesting! He missed my red flags too, apparently! I don’t know why he got baptised if he doesn’t actually agree with the tenets that created us.🤔

The other example of my not being a Christian that he gave me, is that my living by the scripture above, and others like Eph 5:11 that tells us to have no fellowship with the workers of darkness aka evil but rather to expose them, is not Christian.

Yes, you read that correctly. By obeying the Bible and wanting to be intentional about who I allow not in my space alone but specifically in my children’s space, I am not a Christian. Apparently, a true Christian disobeys the Bible. I am apparently meant to want to be with the older cousin who told me I was wrong to adopt and that God was punishing me for adopting when He gave me twins.

Yep, he was “hurt,” he said, that I wasn’t sad and rushing to her bedside when she was dying. Her bedside in a whole other province far away. He was hurt not because she hates his children and his wife, but that the hated one didn’t go expose herself to even more hatred. Apparently, my avoiding more pain makes me “bitter.”

Also, my lack of interest in hanging out with ‘get rich by illegal methods’ sibling of his is not Christian. A sibling who like him, is a preacher wolf in sheep’s clothing. A sibling who was attending sex parties while married besides also being sugar daddy to married women, even buying one of the many, formula for her baby. I don’t know if the baby was her husband’s or the sibling’s. A sibling who divorced his first wife after he drove her insane by his gaslighting and being inappropriate with females even at church in front of her. A sibling who borrowed thousands from said first ex wife, and then called her a “fat, ugly pig” when she begged for it back after waiting and waiting. (No, I don’t know why she lent it to him. Maybe she was still not sane and thought her money would win him back?) A sibling who was still a preacher man while being unfaithful to his second wife who divorced him.

It was wrong of me to not want him in my space. It was not wrong of his sibling to do all the above and more.

He clearly missed the red flags in me. I never kept criminals or cruel people as friends. I don’t have anything to do with my own criminal blood sibling. My friendships were with kind hearted, sincere people even back then before he married me! The Bible asks, “Can two walk together except they be agreed?” Nope. But clearly he’s in agreement with everything I’ve listed, and many more I won’t list. Because he definitely walks with them, sits with them and he takes their counsel and loses us half a million rand by joining in with the “get rich by committing crime and give lots of money as capital to fund this illegal activity.”

And that, my friends, is one of the reasons he gave me for chasing after Mrs Nontsikelelo Radebe. Because of the above that prove that I’m not a Christian and deserve to be cheated on.

The mental gymnastics are astounding.

My child was sick even before her father went on his extended holiday to Japan. It’s been over a month now, people. I haven’t had an AS flare in ages so for much of the time, I’d have slept without pain until this week. But then, she was too sick to sleep, and so so was I. Well, too awake to sleep.

Enter this Tuesday, I think it was Tuesday. My girl was withdrawing into herself. A shadow. Even now at 6am she was awake, but listlessly lying on the cold, tiled floor.🥹 Her bowel moved a bit, she came to me upset and miserable. I tried to figure out how to teach while nursing her. I was so caught up that I missed a call.

It was 30 minutes before the end of the session that I realized I was meant to have been at the next DISCO assessment appointment! It takes about 15 minutes to get there! Oh no!! I felt so bad especially as they’d tried to phone me, text me. I phoned the secretary and was soooo upset at myself. But she was kind and offered to shift it to another time on the same day if the psychologist was available.

She was.

So I went. I apologised profusely. I hate inconveniencing people. I hate wasting people’s time. I hate being late already, now being unaware completely? But she told me not to worry, “You have so many children and so many worries anyway!”

On the 2nd, a text came in. I’d forgotten to pay the ironing company. Sometimes I even pay early! But this time it wasn’t even on my radar. I thanked the lady for the reminder, explaining how much more stressful than normal our life had been.

When my son went to pay, I asked him to apologise to the staff there too. They were also very gracious, telling him, “It’s ok, your mom has many children to worry about.”

I feel like I’m falling apart. Like I’ll have a stroke and become a drooling quadriplegic, unable to do anything. We know how hard being special needs parents is. How damaging to the psyche. We know how psychologically and therefore physically, damaging abuse is. Let’s not forget decades of pain and suffering, no sleep and sadness.

When I told the father of my children that the gynae had said I need to take a rest and a break every six months and just go and unwind, he said, “I’ve always told you to go to Pretoria, but you don’t want to.”

Let me explain. In Pretoria, is a little house my children (now only daughter) live in. I would have to take a two hour plus flight to get there, then a 45 minute drive. Sitting in the plane is hell. A hell I will never do again and if you loved me, you’d remember how awful it was when I went with the children to Pretoria.

In Pretoria is a house that has stairs. Stairs are bad for me too. Stairs and a stove I will need to use to cook on as always. Sounds like a true break, right? A house that unlike a hotel or guesthouse, has no aircon for me to warm or cool down a room before I enter it. Yeah, that’s really something his colleagues would view as a getaway. I say colleagues because he copies them and their leisure pursuits.

It makes absolute sense that a man who would go to Tokyo for fun, spend many nights there in a hotel, would lovingly tell his wife that the only REST she deserves is to hurt her body while wearing an N95 mask for over two hours for the sake of her fragile lungs, to go cook and go up and down stairs. Of course, someone who laid out even extra for meals his hotel didn’t provide, and for a tour of Japan, would suggest his wife just have breadcrumbs.

If he’s demonic.

Which we established many years ago, he is.

These are the assaults I need to get free of. No matter how many times I even show that STRANGERS care about me, it doesn’t matter. He will never learn to care. He didn’t learn kindness and empathy from me for over 27 years, he won’t learn it from strangers. It’s a constant reminder of how hated I am, living with someone who hates me.

Any wonder my head feels like it will explode and my brain not be able to think nor feel? It’s not only that I’m doing most of my parenting life alone, it’s that I’m the only one who cares about me in my own household.

Indeed, I have reasons for forgetting. I have much to remember.

To avoid burn out, you need a supportive adult who loves your children and will care for them adequately. You need a person who understands all the needs. I will not be joining this meeting regarding burnout. Maybe when I’m free…

Last night, my girl exploded all over herself, the explosion of poop reaching behind her, around her onto my bed, behind the bed, on walls, on her head, up her back while she was bent over onto her hands, into textbooks, soaking through the covers onto the pages.

The river on the floor was gross but it was on my fresh bedding that I had broken my back putting on that very morning. I ran another bath for her and then went back to see how to clean. But most was on the floor so after a few painful bends, I called Amarissa to come and I’d do the bedding instead.

Her lament, “Why isn’t dad here to help us!? Who does he get a break?”

That’s a lament I make every morning, weekend or holiday. He never is there for the morning madness. The slow getting dressed, the multiple meds, the timing of the meds, preparing meals…He is never there to be a true father.

And these mornings as the ASbgets louder and louder, I feel the lack even more.

I had children to parent them myself as if I’m the custodial parent and he’s just a holiday father. But doesn’t even do as much as a holiday father should do.

I hate AS. It scares me. What will happen the older and lonelier I get while stuck with fleeing children who will never be adults? Again, it’s no wonder I forget.

I pray God gives me the strength to be the primary parent for the rest of my life.

My poor girl is still very unwell. She even survived a weighted lap blanket she put on her head as she lay on the sofa, something she never does (lying on my sofa, that is!) That stuff that creates the heavy weight is hard and heavy inside. I use it for the girls when they’re doing school to help them focus and feel more regulated. I got her a blanket for her body, and she fully covered up for 33 minutes till the music started. (At 18:30 I get the children to play Christian songs.)

She was cute in the morning to. Went to the kitchen to eat bananas and when her brother saw her and picked her up to change her, I took clothes for her to wear and found her carrying the fruit bowl. Mostly empty as she’d eaten lots in the kitchen. (Nope, no stool all night despite two whole doses of adult size and adult medicine for colon emptying that day.)

Maybe today will be the day she empties fully. One can only hope. 🥹

Meanwhile, her twin sister who had woken earlier and had come and said she needs a snack to “help” her stop being scared of the rain, was also on a funny streak. She was complaining that she “keep making a wee! I keep having to come to the toilet!” I told her that maybe she’s getting up too soon (ADHD) and therefore not actually emptying her bladder. I suggested she sit for a while and wait and see.

Her reply, “That is a great idea! You have helped me! I will try it! Thank you soooo much! What a wonderful idea!” 😅🥰

It worked. She survived car trips and didn’t come in needing the toilet. My immediate thought was “UTI!” But that seems to have solved the problem! Let’s see today.

And the final cutie pie moment I’ll mention, was breakfast. I make oven baked chips, vegan schnitzel or burger or pies etc during the week. The day before, Amarissa had gone on a vegetable shopping spree. (This is for her weight loss BUT she keeps wanting to EAT all the vegetables all throughout the day. Yeah, that won’t help!)

She cooked it. I’ve been letting her cook with minimal guidance so she learns from mistakes and we discuss it as part of her home skill I write down for her school work in case some boys authority figure wants to know our routine. Both girls were invested in the tomatoes and carrots they’d bought and were eating them. Unseasoned!

I added some herbal salt to their tomato slices and you’d think I’d given them the holy grail, the way they were so thankful! So cute. Most importantly, Twin A who never finishes her breakfast, finished it all, even though it was now much more than what she usually eats! She is the child in the family who proves the adage that when involved in choosing and prepping, the child will eat what they wouldn’t normally eat. I am so proud of them for loving plain veggies!

When she made broccoli, I had to advise her over the phone and she was enjoying it purely boiled! The added herbal garlic mix when I got home from her DISCO *interrogation session was the cherry on top. I hope they always have a friendly relationship with vegetables.

I tested my girl’s stated desire for vegetables by telling her she’d be paying for them from her pocket money and she didn’t balk. Wait till she finds out I am not counting it as money spent! She will be so happy. And I’m sure, motivated to continue. And now you see why I’m so proud of her resolve. She literally bought the vegetables herself, with money she can buy anything she wants, with! Well done to her!

Here’s to healing, recovery, weight stabilising and a better life for us all.🙏🏾

*It’s an interrogation because it’s hours of answering questions about things you really have to think deeply about. Some I didn’t recall, like if she had started waving by x number of months! Who would know even if she was the only child they had!? Not many of us!

It started with increased grunting on Thursday. I knew she wasn’t ok. I took her for a drive to see if the car would soothe her enough to feel happier. It didn’t. Instead, my stress and worry, helplessness and fatigue increased with each kilometer I drove.

What is wrong?

Why is she acting the very same way she acted before I took her to hospital the other time? But she’s been passing stool. What’s wrong?

For loving parents, you can only be as happy as your saddest child. That already puts me in a constant state of unhappiness given my children’s neurodivergence makes them miserable each day for different reasons. Add the inability to communicate and you have a mother who can never be truly happy. And that’s without the audible grunting from pain.

Then things regressed. My children, and by extension I, do not slept well anyway. But it’s now even worse. My girl has been up and loud by 4am. The father then leaves me to keep her somehow quiet so she doesn’t wake her siblings after telling me, “I have to go run.” And then he has the silence, no grunting, no worry, no crying and sadness during the day. No night time interruptions, not even sleeping late like I have to till I am sure every child is asleep and won’t come wake me.

This morning, erupted with bleary Sjögren’s disease eyes, teeth, AS pain and her sounding wide awake and loud. And by 5am, she was screaming. I suggested hospital. The father said nah, we should wait for me to book an appointment for her to see the pediatrician. Today is Saturday! I told him the paed isn’t available till end of April. (I needed to see him to put our PMDD girl on birth control so I’d contacted his rooms on Thursday.)

Then he asked if she doesn’t have a GP she sees. No…She has a paed! And I reminded him that a GP can’t see through her to see if her belly is empty. Yes she has been moving stool, but she’s acting exactly like she was when I took her to the hospital on the 6th. I know from normal info that one can be constipated even while going regularly. Add the Sjögren’s lady whose scan also showed way too much stored in her despite how often she does go seeing as our bowels don’t produce liquid to move things along, and you have a suspicion her belly isn’t ok despite the multiple poops throughout the day, two of them complete blow outs that required an immediate bath and change of clothes.

I ended up saying, over my poor child’s screams that had now woken Ammy and broken her heart, “If I was healthy, I would take her to the hospital. This isn’t right.”

They went to the hospital.

And yep, her stomach is PACKED. We have two medical type clean outs we must do, then adult colon meds for five days after. I pray it works. I pray it never happens again. With her diet, it’s very easy for this to happen. I really hate autism.

But hey, all is right in the world. I got the meds into her -150ml is not easy! And her father is happily restfully napping for an hour. Being strong and healthy and sleeping at 8pm and waking at 4am to go run must be so hard.

Meanwhile, I hope her grunts of pain disappear. And never return. I am barely holding on as it is. I feel like something in my head is going to snap. I keep telling God that I want to be thankful, but the suffering He is allowing in every single facet of my life is over shadowing a lot of the light. I am not content. I want my child to be able to tell me when her pain is starting so I can catch it sooner. I want to get a break and rest. I want my children to stop being challenging so they too can be happy.

I asked Ammy why she lied about her little brother. There was no reason. It’s like she seeks trouble for others. She wants me to reprimand an innocent sibling.

But then her response becomes so extreme that you have to remind yourself that you do have to discipline. You do have to ask why, and tell them it wasn’t kind nor right. But man, the reaction is also as intense as the many times a day behaviours.

I need a happy group of children.🥹

My poor girl is getting roasted big time by her younger siblings! I was in my bedroom with her and Micaiah and she started trying to do push ups. She was complaining that she at least used to do four before but now can’t do any at all.

Micaiah said something about her arms…

“Why do your arms look so big and fat? It’s like you’re that obese uncle with the very big front tummy!” I forgot to even ask which ‘uncle’ this is because my girl started laughing at herself so I just joined her as I tried to see if her arm really WAS that bad.

I have one answer to the previous post. She is still gaining weight. She’s gained a kg in a week and is now heavier than her 20 year old brother. I told her our first goal will be to stabilise her weight before we even look at loss.

Then, later, her sister was outside looking all cute reading a book (The way my parents used to hate it when they caught me reading was awful.) so I silently went out to see her.

This is her when her ADHD meds have worn off. I love it.

Micaiah and Amarissa came out and then this little one said to me, “Mommy…I’m really worried…Why does Amarissa eat so much? All the time she’s eating. And now she’s fat.”🫣 Thankfully, the girl herself thought it was funny because we’d been talking about her weight while her sister read outside. And we’d checked everyone’s BMI and laughed at the results.

First, we’d calculated her BMI, the pointer moves, so it moved all the way round to red and ‘obese.’ We did mine, and mine moved to the upper end of ‘healthy.’ Yes, I know the stats are not for people like us because our body composition naturally has more genetic fat than who it was used for, and the creator apparently even said he had never meant for the BMI measurement to be used on the general public anyway. But still, our silly Discovery med aid still uses it.

Then we did her little brother and it moved less than it had moved for her and I. And then, her big brother. Our autistic who never gets hungry and eats only when I remind him to but I have four small special needs children and pain so I don’t make him eat regularly as I forget he’s my other baby…

His needle moved like two millimetres to the upper end of ‘underweight.’ My girl thought it was hilarious that his barely moved, while hers made an almost 180 degree move to the other end of the scale. At least she thinks it’s funny😩.

But she was also roasted by the assessor and I. In her absence, of course. The DISCO day one assessment was apparently lightning fast. The psychologist said I was the fastest parent she’d ever had. I bet none of the others already had four already diagnosed children! And hadn’t BEEN talking about autism for the child for probably two to three years like my friend and I have been.

The questions were very different to other assessments they use. Interesting questions. Things that opened my eyes to autistic traits I didn’t know about. Like how her refusal to get dressed and also to tidy up is clearly PDA. Duh! Because she doesn’t always verbally refuse like her younger sister does who has it and it is severe, I just thought it was only ADHD responsible for it. And things like how badly she does her chores were asked about too! And the answer is, VERY badly. Yes, she definitely ‘needs supervision’ for all her chores because she will pick up two things, throw them under the bed and she’s done. But there will 39 other things still scattered all over the door or the table.

Another one was how she wasn’t safe outside at age three. Most kiddies can go out and just faff around and then come in. She was eating weeds and flowers until she turned NINE years old! She was disobeying us and catching bees and getting stung last year.

Another one is all her climbing! It was asked about! Oh yes, climbs on table and dances about on it very dangerously. Climbs trees and hangs upside down. Climbs wardrobe shelves, kitchen counters. Yeah, an 11 year old doing that is one of the traits of autism! I didn’t know that.

And one roast was her common sense. We laughed because as she herself had observed when she assessed Amarissa alone, “She has no common sense! We mean that in the nicest possible way. But no, she has none!”

This was the first time I didn’t feel sad when answering questions. Other tests focus on deficits. What’s missing, or stopped happening. I understand why there are always tissues available. But this was about actions and behaviours and thought processes that exist and point to autism and PDA.

And of course, her total lack of social skills. Not caring that she is out in public looking crazy with pantihose on her head, never realising her skirts are always tucked into her leggings at the waist. And too friendly with everyone. The type that will happily go off with a stranger. Add how she runs away and you have danger. I plan to buy an alarm for the gate so it warns us when she goes out, though her father doesn’t care. Instead he even told her, “You want to leave? Then take your stuff that you bought, and go.” Or he told me, “I will take her to Dunoon on one of the Saturday drives I take them on, and leave her there and tell her to walk home. Then she will see if she still wants to run away.”

For the West, Dunoon is a huge slum area with a LOT of crime. One of our old church families used to live there. He has been mugged twice there. Why would you even plan to dump a child anyway, let alone there?? Another case for why he must never have unsupervised visitation with the children.

But yes, we got through much, much more than she had ever gone through so she doesn’t think we will use all the sessions we’ve booked. My body is glad about that. But so far, the answers point to autism with PDA.

And the BMI scale is on the middle of obese and still moving. Oh boy! And I just realised I forgot to hide food last night. To be fair, she herself roasted herself. I sent her birth sister a recent photo and like birth mom two days before, she commented on the cheeks and called her her twin as she too is overweight and has chubby cheeks.

My girl asked why she’d written “twin” when her (sister’s) cheeks are smaller than hers.😅😅

My poor girl has gained so much weight that even before the recent five kg she’s gained in two months, the paed said we need to keep an eye on it and decide when we next see him…

This was her behind her little sister 11 months ago.

It’s not only about how her mean father told me she looks like a toad, but it’s because she looks pregnant in her two remaining dresses that her arms can fit into, and because those have empire bust lines that hurt her tummy as they are very tight.

She has been wearing two of my skirts..below the waist as the waist is too tight. I had bought teen size underwear but it hurt so I moved to adult size small undies after she took mine without my knowledge and it fit, and crop top bras in adult sizes too, but they too are hurting her and digging into her now. I bought them two weeks ago!! And you long time readers know that with her low registration sensory profile, it takes a lot for her to eventually feel pain. So now I’ve had to buy a bunch of adult size medium that don’t have seams, made with the most elastic material possible. She wore my too large for me medium exercise bra and was comfy.

Something is terribly wrong when your 11 year old is bigger than your menopausal, unable to do proper exercise, self. I feel sad for her. I wish I could control her appetite. But with the meds she’s on, the anti psychotics that also caused extreme weight gain for one of the twins (The other twin and Micaiah haven’t gained extreme weight from it) I am fighting an unfair battle. I’ve added a lot of exercise in our schedule for her for when I have time, but yesterday she had OT and today I have an assessment to attend. But also, her appetite…

I will tell her, as I walk out the kitchen carrying laundry, that she cannot have bread and peanut butter when she’s going to have supper in 15 minutes’ time, and when I come back to make said supper, she’s made the sandwich,, left the sticky knife on the counter and eaten it all. She will eat multiple bananas in the middle of the night and anything else she can find. She takes fresh fruit concentrate but instead if diluting 1 to 3, does it the other way round with three parts juice and one part water.

I truly don’t know when her weight will at least stabilise like our twin’s has. She’s been wearing age 8 or 9 clothes for many months now. It needs to stabilise. It’s expensive, buying clothes every few weeks. It’s unsustainable and she already doesn’t have enough outer garments as it is.

I never considered clothing when I thought of extreme weight gain till now. I never thought of underwear digging into the body and causing pain. How do I make this the plateau? In have no idea. Exercise isn’t enough. I provide low carb, low cal options but she wants the breads and calorie dense ones.

If you know anyone on antipsychotics who somehow fought against weight gain that had happened rapidly, share the secret!

The descent into further sickness has begun. First it was the increased pain, worsening stats for my walking. My walking steadiness is also decreasing.

With the number of steps I have to take perhaps I’m overdoing it, I thought. As you can see, the improvement I started feeling at the end of last year was as real as the decline I’m now feeling.

But now, I am also swollen. It has begun. I started feeling stiffness yesterday when I got up to walk. My joints are cracking more and louder when I move, even my hip! It’s a loud snap like something has been cracked apart. Amarissa even asked me, “Why does your body crack each time you move?” It’s scary. When I sit down, crack, crack, crack. When I shift my weight when standing, crack! I sometimes look at the person I’m talking to wondering if they heard it.

This cracking is chronic inflammation where the ligaments and tendons enter the bone that causes calcification at the joints. Ie new bone forming at the meeting point. As you move, sit etc, they react. It’s also due to fusing and friction . It’s basically, a daily reminder that the medicine you’re taking is truly only slowing the disease progression down. It’s definitely not a cure. And that, is always a horrifying reminder.

When I was diagnosed, I had to mourn that not only would I never be cured, but that each day that passed, was the best I could ever be. The following day, is going to be worse, might not feel it, but it is a steady downward fall. We can’t stop it. And my lungs attest to it just as my feeling it in my body and just as my health stats do.

And so, dear reader, imagine how I am suffering having to be physical caregiver from 6am until 10pm when the last child can finally sleep. I told my eldest son last night that this morning it will be his turn. Sometimes I drive our loud little lady at 6am so she doesn’t wake her siblings. Yesterday I got her to stay in a room far away and she allowed technology to keep her soft. And my breaking my back bouncing her on a ball. Unfortunately, most of our cameras aren’t keeping recordings and we don’t know why. Their father is wondering if we should subscribe to a cloud service. Which costs a lot (but not even as much as one night in his Tokyo hotel.)

And this what I hate. Every thing I do to be a present mother, hurts and worsens my condition. Today, I’m going to email the paed and ask him to also add my 11 year old to the education department’s waiting list for special schools. I found a private school that seemed to be different to the others that want autistic children with average or above average skills and emailed them. They do fit her with her learning disorders and inability to ever do academics in the near future but with only a (current) ADHD diagnosis. I start her DISCO autism assessment tomorrow. An hour at a time, I go answer questions about her. I will take my water and my eye drops. I keep forgetting and that’s for shorter appointments and struggle to see when driving home.🥹 But yes, physically, it is HARD raising my special angels. I have a post planned on the difference between homeschooling them vs non challenged children.

I don’t even have a father for them. My talkative twin was so excited to tell him T got rid of a splinter that was fully under her skin and hurting her and he didn’t say a word. I guess it’s better than when our eldest girl told him she got 94% for an assignment and he replied by sending her a work link that he’s now on the Board.🙄 He’s always out going to go do his marathon training super early and for hours. He doesn’t care that he’s a father first, before he’s a ‘use all our family money that he claims I am finishing’ to pay hundreds of American dollars to enter the races, and then tens of thousands of rands for the flights, food and accommodation.

My plan is to ask for an anti dissipation interdict. See, being married in community of property, legally, he had no legal right to have sent half a million to his cheating on wife one and wife two brother against my express wishes. And of course, no legal right spending any money of a significant amount without my express agreement. The ‘in community of property’ marital regime was “designed for the protection of housewives who give just as much to the family as the breadwinner does.” And so, I will have to use the law because he doesn’t acknowledge me nor the God whose whole law is also an ‘in community of EVERYTHING’ law.

I just don’t know how. I don’t even know how I will find the regional court to apply for divorce! I don’t even have strength to go to the shops anymore. Let alone go and find it somewhere in town, and then queue? I don’t even know how it works. Now court interdicted for anti dissipation orders?? No clue. If you do, please share. It’s a court order to stop him giving our money away to the randoms he’s been giving it to, and to stop wasting our money on his personal unnecessary activities which REDUCE his already very limited time being a father to his children and take a lot of our money away. You do it when you’re planning divorce.

And please pray that I find someone to help me do this. I wanted to search yesterday, I found out about it while searching in the morning, but then my girl -who has been awake and noisy since 5am today, but is playing in her room for now- got out her bedroom and the day was just too busy. I need time. And four special needs children, planning, cutting, researching and a weakening body do not allow for time to sit up searching and asking coherent questions. Don’t ask me who I will ask as I don’t have a lawyer yet.

The swelling that’s beginning, and stiffness are in my lower back and fingers. Winter is clearly going to be the usual poop show it has been since I was an innocent high school pupil. 🥹

Like I hate ‘non communicating’ (weird phrasing) autism, I hate AS too.