They said I should write a book

I am lying down for a short time, crying and undone. Completely undone. I can’t take the strain any longer. I can’t be everyone’s saviour and protector when I myself need nurturing and care.

I am tired. Tired of being the only one who worries, nurses, doctors and has no support whatsoever. The tutor aka facilitator spends whole days on leave for something that does not need even one DAY away. But I can’t replace (He knows he’s got no more warning left but only a firing due to other reasons so it won’t be a shock) because I have no helper and the children need to get used to her first.

But the process of finding a ‘her’ is proving laborious and stressful. People with fake permits. Malawians have generally never received refugee status. So why even try that if all things? But the stamp was in typical Malawian English. “temporal processing office!” Vs temporary!

Most are from some agent person pretending to be multiple people, or speaking on behalf of multiple people who probably paid her for work placement and then she’s pretending to be doing the vetting, and then not pitching up. Realised when two gave the same excuse for not having come when I asked what happened to the interview. Panic attack, one said. She was stressed all night nervous about the interview. Another said she got nervous. After I confirmed an hour before arrival time, no less.

I’ve discussed with many people, over 12. Planned and booked interview slots. And only two have come. Lots of wasted? Precious mothering time and wasted opportunity to communicate with someone who actually wants the job.

I need reliability. I need help. And I need rest.

But instead, I have the Ankylosing flare to beat all flares this year. This is the big one. I couldn’t wake up at 5am. And this is after our girl actually slept! She did not make noise and cry till 11pm like she usually does. She slept and I was waiting for her to come out her room, so I didn’t relax till midnight. Ok, most people wouldn’t have been able to wake up anyway at five. But it was like I was trying to wake from general anesthesia. That heavy AS fatigue. So I slept till 7:15am. That too, is not me. What woke me was our non verbal angel shuffling into the room after opening the door wildly as if being pursued by a criminal.

I’m typing and hiding in my bathroom. But my ten year old is outside my door. He has walked past all bedrooms to get to mine and what is he asking me? If his sister -whose bedroom he passed -is awake. That’s what I mean when I say I can’t get a break, a rest. It’s not only physical, but I can’t get a break from irritating intrusions or questions. Whatever will interrupt me is never serious or necessary. And that becomes tiring and frustrating.

“Why are you walking like that!?” Asked my six year old who had come to ask for Prestik, as if I was being stupid.😅 I couldn’t move my right leg! “Mom, you need to lie down,” said my eldest. But he’s had to take our Twin B for a drive so I have to keep medicating. *Picture me crying internally in self pity.*And each step was (is) a shooting pain. But I had to keep moving to give every little one their antipsychotics, antidepressants, mood stabilisers, anti ADHD insanity meds, allergy pill, beta blocker… My fingers don’t want to fold to hold the tablets cos they’re too stiff, my right hand feels like it’s made of heavy cement with pain running through each finger. Back muscles spasming as if in labour and bicep muscle sore and achy! Hurts even more to bend my arm to drink water with my tablets! But wait, I can’t rest

I need to take my girl’s BP. I told you I get no break from being doctor and nurse! Ammy who suddenly had a headache last night and felt dizzy. I gave her a bit more of her heart med and she went to bed ‘only’ feeling dizzy.

Her BP was fluctuating wildly this morning.

Five minutes later it was the opposite but still bad.

Her tachycardia is still present so I gave her her beta blocker, and a pain pill that she got for the knee injury last Sabbath for her blinding headache. My Sabbaths are never “pleasant” like my friend wished this one would be.😩

And another ten minutes later she was more relaxed. I’m hoping her heart rate will also stay stable too and her numbers improve.

Why is she like this?

Delayed side effects of the iron infusion. It’s normal but awful. Can become full flu symptoms, fatigue like she’s feeling.

And that was why she was in bed when her little brother came to ask me if she’s “still sleeping.”

But now she’s up. She decided she didn’t want to miss out on a trip to Helderberg Nature Reserve that I suggested they take so I could have time alone. And our paed appointment can’t come soon enough. No 11 year old Angel should be wearing clothing much larger than that of her menopausal mother.😭Her BP can’t be normal anyway while clinically obese and hasn’t been for a while-just not as bad as today’s numbers. I am hoping the paed makes a plan so she stops growing bigger and sicker.

These are size 16 clothes. Adult size. (Our sizes are like UK sizes for my one reader in the UK. I see you!😉)

There’s a lot swirling through my mind but my back is spasming so much that it’s not even able to focus on each thing. It’s like I’m pregnant and the baby is kicking my spine, that’s how the spasms feel. If you have IBS, you might know the spasms when our colons cramp up and ease them cramp up again during our IBS flares. It feels like that but faster and stronger. Contractions. Time to take my muscle relaxant! I’m very slow.

But my excuse for forgetting my tablets is that I had to continue my lovely Sabbath discussion with my friend on the resurrection of our Jesus. The way the women were the ones given the message! THE message! But sexist males refused to believe them. I posited that given Christ was so specific and intentional in everything He did, going to Samaria to show the disciples He loves everyone, it’s highly likely He wanted the disciples to value the women they way He valued them. And what better way than to have them carry the fists gospel message post crucifixion?

With how Tabitha aka Dorcas was raised from the dead, the lesson was learnt. Women are just as valuable and as useful as men. Ignore what the Pharisees have taught. See how Christ sees.

Wow. I’m in so much pain and I’ve taken every pain med I can take.

So stressed my shoulders are by my ears and can’t even try exercise it away! So cold my bones feel like ice. Hehe. What a litany of complaints. I can’t believe anyone reads what AS is like! People have become so unloving that it’s odd to see repeat readers of what is basically a diary of an incurable disease or four. And incurable disorders. It can never be a happy blog.🥹Yet Flydah keeps commenting, too. Thank you!

Oh, breaking point? I can’t take it all. I am pretty sure the extreme AS flare is due to the stress I’m under. And I don’t know how to reduce it. I can’t find a reliable helper, how will I find a reliable tutor and driver? I can’t make my children well and I can’t clone myself. I am helpless but the problems don’t decrease in proportion to how helpless I am! I can’t find any curriculum for the first grades of the differentiated CAPS curriculum but there are a few for age 14-18. We are very far from there! But a normal curriculum isn’t serving the two. I need my children in a school. But I can’t afford private and no communication for public. All out of my hands. Like the divorce process that’s also causing me mental strain. Ok. Really good bye. My wrist is dying.

I answered in for affirmative and asked why she even asked that so many weeks later and so unexpectedly! Seems my mentioning how I don’t get any time to eat during the day matters to her. That, is not MY norm. Nobody else has worried about my not being able to find rest or a break to eat during the day.🥰

Yesterday, it would been a no. I tried to make time to eat, I got as far boiling water in the kettle. I then only ate at 21:00! I look at my grapes, my gluten-free sandwich prepared yesterday as I walk past to and fro doing school work.

Another one I was asked today is how I’m coping with the housework. I am NOT. I never sat down to get proper rest even with househelp. Without it, it’s a losing battle. And nothing in the home strips my peace of mind like clutter and dirt. Give me noise anytime. But mess and clutter? Watch me take things off a sofa and then an hour later even more than you removed is back? Especially with children’s facilitator that didn’t pitch so it’s all too crazy and not school friendly? It kills.

What also kills? Being a single mother when I should not be one. I want to move two of the children to a South African special needs curriculum. The ones we have are still academic and I pick and choose which is applicable for them and the direction they can head towards. I wanted something needing less research and giving more research. I also wanted to be able to match what the public special schools use. The private ones adapt a British special needs one. But our SA ones use an adaptation of the national curriculum. Except, there’s no actual workbooks given by the education department, no textbooks or teacher guides for what we should teach. They just tell us it’s 80A% practical. How do I make that REAL? How do I implement that? What do they expect from the child at the end of a level? No idea.

And I have no fellow parent to discuss that with. The victories we achieved during our home education journey didn’t matter. The difficulties matter even less. For a man who views glasses as a sign of ugliness, other disorders are even more distasteful. Hence the way the infidelities started when I was in the midst of getting diagnoses and assessments for our now ten year old. And why he resumed when the twins were also broken. I now believe he decided to conceive instead of adopting as planned, out of a desire to NOT have a broken child.

Instead, he got two ‘broken’ children. And I’m the only one raising them and loving them. And sometimes, it stinks. A feeling I’m sure many ‘not by choice’ single mothers experience, given they didn’t make their children on their own.

For now, I am thankful for the teacher friend who noticed I mentioned my DCAPS desire mentioned on a different sm platform, and is looking around for resources. 🙏🏾

We don’t need necessarily need men, we need companionship and a circle of warmth and concern. Blessed are those who provide it even from afar.

Back in 2015-2017, we had a lovely lady become our helper. First help I ever had. She was lovely and no other could compare to her after we left the area except for Violet trailing here behind our girl at 23 Jump Street.

I’m trying to understand why it’s so emotional saying goodbye to Violet yet I felt nothing with Veronica. The best I can come up with is that Veronica never heard my problems and never showed any affection for the children and babies. We spoke about her problems. I was her encourager, I wished the best for her daughter. I drove down to her neighbourhood to give her daughter a gift for being the first in their family to finish high school. She told me about how the other Coloured people in the neighbourhood laughed at her for working for Black people.

I never told her my husband was being unfaithful. It was during the days when I lamented online, the fact that everyone treated me like an unpaid counselor and psychologist. Besides my social media sisters, every ‘friend’ who had my telephone number came to me for counseling, therapy, advice. A friend acknowledged it once. She said she’s a terrible friend because she never ASKS yet I always do. She was one of them and I only realised today. No wonder I didn’t feel sad. It was superficial. Boss and employee.

But Violet, the first time she came to our home, very first time, she spoke about me. She told me I was very different to other Black bosses. She saw me and said lovely things about me. She shared her heartaches about her children, but also loved mine as if they own her heart. She shared photos of them on her status always. They were (are) her children and she is-in their little autistic PDA world-their friend.

I will acknowledge this. I am a good woman. I always mention my youngest brother in law hating that my blogs were always titled “Imperfect Mom.” He said I was the closest thing to Christian he’s ever met. That I was doing everything I claimed to believe in and had a good heart too. I always took it as a comparison to their family. But maybe I am just good in general.

I know one thing. I was raised and then gaslit into always giving. We had Veronica but I’d iron on her off days so that she doesn’t think I kept the ironing for her. To prove that I don’t feel like she’s a slave. But in Veronica’s eyes, who knew she’d left ironing, it meant I didn’t like the way she ironed and she told me to correct her! Stop being nice!😂😅So I told her why I did it. I don’t think many bosses hear that.

Also, my children. I think of my best friend and the children where she worked. They knew she was “the help” and even rudely told her it’s her job to do a, b and c. Meanwhile, my children told me it’s amazing that Aunty Vi and Uncle Tashreeq just randomly came off the street to play with them and help me. This is this year! All this time, it never dawned on them that they were paid staff who were being told what to do by a boss. To them, we were all equal. They thought Aunty Violet LOVES to clean and that’s why she was doing it.

It came to a point where if I managed to get them to tidy up, they’d tell me Aunty Violet would be impressed! If they saw me using a broom, they forgot all the years of seeing me sweeping and told me not to touch Aunty Violet’s possessions!😅And if they couldn’t bring themselves to tidy up -it’s truly difficult for adults ADHDers too-they’d tell me not to worry, Aunty Violet will be very happy to do it and if they did it, then she’d be bored and sad because she likes cleaning and she would have nothing to do.

I am proud of myself! I never allowed them to disrespect anyone like my friend’s bosses children did. But, they do have PDA. So they scream if they think she’s about to get rid of something they believe is a treasure -usually tiny scraps of paper! They blame her for their things going missing because she was in their bedrooms. 🤦🏾‍♀️

Where will we find another soul who will work well and also love my children well? The very first candidate stole money I gave for transport and they’ve all been so dire that I only have called one for an interview and before she even left, the children were telling me not to hire her. The one big reason? Discombobulation. My son spoke to me so shocked, asking if it’s ok for women to have a moustache. It really bothered him.

My first reason was that she mentioned how she told her daughter she’d better help her lift a bed to look under it. You kinda have to be moving beds and all while cleaning. Everyone else after that has been bossy even before they come, have said they have autistic family members, but then don’t pitch, or tell me they are far away with their boss and the autistic child (It’s school holidays for the general public), but can leave them and come take the job! I asked what would happen if the interview showed problems and I didn’t hire her? She’d have used money to come back early.

But most importantly, most are currently employed but show no compunction in just leaving their current boss in the lurch. They have children they are caring for but just want to depart. Without warning. That is a big red flag. I don’t like someone who has no concern for others. And they leave because they want more money. There will always be someone offering more. I am not rich. I’m not the white folk who pay a salary, pay extra for transport and also pay the domestic worker’s school fees. I’m a mother who is about to have less money.

Violet came and stayed just as I had asked. My inattentive husband paid her R500 more than he should have for some months, because he’d forgotten her salary. She earned every bit of it anyway!

It’s been emotional and terrible. I have never wept in front of my children. But these ones never give me space to be alone, so one came and found me while I wept. Violet was not only the help I needed and the hands I could not be, she bore a lot when our girl was in her “attack people” phase. She went to change her diaper where she was, she picked her up when she refused to be changed but was soaking wet.

The stereotype of a hard worker. She and my best friend share those qualities. They give extra to their work. There are South Africans who work hard. But they’re a very small group. They have been a blessing. I hired because I need the help. And Veronica and Vi never took a single day off. That was a huge blessing to me. I need the help. (Yes, obviously Sabbaths they didn’t work. And public holidays were always off.) I hope and pray I find someone like that. My body is broken. And I am tired.

I don’t even have space to cry without a child interrupting me and then me making them cry.

With a good worker who enjoys their job and is committed to it and our family, a part of the burden reduces. And I need that small bit of reduction.

Thankful I got it from Vi who even hated taking December non public holidays off and forced her way in on the days I allowed her. A breath of fresh air and these lungs are in need of the oxygen.

God bless and travel with her and her sister. She has built a legacy for her children. I pray they appreciate the sacrifice it took to buy a farm and hire workers. She will rather labours of her hands with her daughters. I hope after all these years gone, the adjustment to her being the real mother goes smoothly. We both foresee a bumpy road and it scares her. It’s not an easy goodbye even for her. She already she’s tears in Friday.

Today is her last (half) day. Every second Sunday came half the day. It was to babysit while I went to the store with my husband. When the last bit of love died, I stopped going to the store and she came to clean and hang washing.

She will not spend all of this shift cleaning. My girl will be limping along with them using my walking frame as they go somewhere different one last time.💔

Can’t bear to checking and editing. My heart is broken.

Haha. Each time she or their brother do this infamous autism smile, I remember one of the diagnostic questions I had to answer for Amarissa, “When she smiles, does she have an unusual expression or way to smile?” No, she doesn’t. But I sure know who does!

She was so sweet just a few minutes ago. Her sister fell asleep in the car. She’d had a painful night. But this being our worried Twin A, she woke Ammy to ask, “Are you ok? Are you feeling alright?”☺️

If she still can’t bear weight at the end of the week, she will go back to the doctor to take x-ray pictures to see if she broke her patella or not. She had jumped and then fell awkwardly onto her knee. The swelling and extreme pain came a day after the fall. By the afternoon, after sitting in the car, she couldn’t get out. She was in so much pain her big sister asked if she wanted them to find a wheelchair. (They were at the mall.)

So here we are today. If it ain’t one thing, it’s two other things! I’m tired. Honestly, sometimes I get tired of being the only nurse and medicine dispenser in the family. Poor girl now needs anti inflammatory meds three times a day. I congratulated myself this past week for having given our ten year old his night time antipsychotic meds every single night instead of forgetting a dose. Now I have extra meds to dispense. And I haven’t yet mixed up Twin B’s cup of meds that I syringe feed her (10ml syringe) every few minutes till the cup is empty. BUT, I’ve given them all their ADHD, antipsychotics, allergy, mood stabilizer, anti anxiety and anti depressant meds thus far. That has to count!

It’s an odd life. Constantly tense. Wondering if there’s a supplement or medication I forgot to give. I realized last night when my chest was wheezing that I haven’t used my asthma pump this week.🤦🏾‍♀️

We need to have more hours during the day. I can’t balance all the teaching, special needs life and my own health in the time I have each day. Perhaps my days alone could be longer in case you want a normal 24 hours.😅

The doctor tried to drain the blood out of my girl’s knee but couldn’t find the pocket (He wasn’t using ultrasound but we can all see where it has pooled as it’s swollen there. It was painful! I know the feeling from when the doctor tried to inject with a thick needle but couldn’t find any space between my shoulder joint no matter where he’d try and prick. The taking the needle out, then putting it back in again is horrible. You feel it hitting your bone…

She must be off her leg this week. He’s not happy with her having low registration. He’s worried she can’t tell or feel the symptoms of a break. Keep her off it!? We all know her! She was taking bandages off after surgery and opening up her post op wounds, moving, bending, poking wound and tearing it open. So I told her to use my walking frame and he asked if she has a brace- we do but she’s a bit chubby for it. It’s a size medium adult that I bought yesterday. I told her to use the frame because she was already hobbling around as soon as she got back from the doctor! When I caught her standing by the fridge, she lifted the injured leg and bent her knee behind her.

Yeah, we have an interesting week ahead! Join us next time, for your next episode of ‘Special’ in South Africa!😉I know Flydah likes knowing the nitty gritty. But I’m also soo aware of the American SDA autism mom whose comment I have mentioned before. It was by knowing I can’t take the kiddies to church and I knew God understood, that she gave herself grace for not being able to “fellowship with the brethren.”

Of course, we could ask why none of the brethren ever ask if some can come fellowship with US, but we won’t go there. I just grew up with my parents doing that. They always visited the shut ins. Even if we cannot have you worship with us, just having someone offer to, would show us we matter. Ok, I really won’t go there! Bye!

My friend, and then a few days later, my attorney, asked if I’ll ever regret getting divorced. My friend was asking because when he’s not traveling, my husband does insist I wake him up to change our non speaker’s diaper or sleep sack or just try get her to sleep.

But on the other hand, even when it’s still early and she’s not tired, he then forces her to stay in the bedroom when the rest us including her siblings, are NOT in our bedrooms. And he’s smacked her hands before for wanting to come out, only for me to check and the poor girl had been trying to ‘ask’ for someone to change her poopy diaper.

That’s not the kind of help I need at night.

So I won’t miss it. I won’t miss him because he refused twice to take our girl to the hospital when she was close to critically ill given the fecal impaction had messed her kidneys up already. I state this because he wants an expensive home to move to “in case of emergencies and to drive ‘firstborn’ to campus.” What emergencies? Twice I drove myself to the hospital after I asked and he refused. Why would I then bother someone who isn’t even in the same house as me? Someone I have servered all ties with except for the law insisting there be visitation -something the children do NOT want. I hate that I have to make them do something like that.

Just last weekend I had to rebuke him. I brainwashed myself into being the perfect wife who instead of arguing, prays for you. Ammy came to me saying her little sister was trying to show their father something she’d made and he was ignoring her. At 11, Ammy has learnt to not even try get her father’s attention. But Naynay gets attention more than they do because she’s less ‘broken,’-he has a distaste for brokenness. He likes her more because she’s gifted.😭And my children know it and have mentioned it.

But the level of brokenness he hates is very likely why he went back to Ms BBL and tummy tuck, boob enhancement harlot. It was at the peak of my AS suffering when I was in so much pain and painkillers not helping that I was asking God to kill me. Instead of being an encourager, someone who will attend consultations with me (Something I’m very aware of given he attended his harlot’s prenatal check after his sister cursed her out and said she hoped the baby died) he drew away even more. He used the pain I feel after intimacy as a reason, an excuse to stop. I mean, when we women are new at it, we have pain from friction, so why not stopping THEN? Because this was a symptom of being broken and unattractive. He wanted a gym rat with plastic in her butt and boobs. Even my friends looked at her photo and were disgusted, and it’s two very different friends. One has principles like mine, and one is one I blogged about who shows her body off online. But they both were equally disgusted by the obvious fakeness.

But it’s not only my being unwell that made me easier to discard. I think it’s also glasses. She doesn’t wear any. He told the children and I that he would rather die than wear glasses as glasses make you ugly.

This is my Crazy Eye and Crazy Smile asking if I look Ugly because I’m wearing my glasses.

I remembered his words as I looked at my photo with my non speaker today. Except, it was after she spoke! She had said a very clear and loud, prolonged, “Nooooo!” when I asked her if I could cut her nails. I’d done one hand earlier in the week but like many autistics and people with sensory processing issues, nail clipping is as horrible as hair cutting is for her. So I stopped at one hand. I tried again yesterday and she was still in a bad place. I know the OT knows our children but I didn’t want her going to OT tomorrow with those long nails so I asked.

She answered! I was so proud of her! As you can see, she was not impressed because I still went ahead and cut them after reassuring it’s only one hand.😅

Today, I sent a voice note crying as I spoke, about not having been fully engaged with a friend. I then sent a message to my dear friend about just some of my life today and she was as heartbroken and worried as I am and it reminded me of how she cried for me and made me cry all over again.

I missed my ten year old’s first day of assessment. Everything has been all over the place due to lack of electricity but still needing to find power supplies for laptops and phones and the all important tablet my non speaker uses. He wasn’t even meant to be gone when the poor Ed psychologist asked if he’s on his way -a message I saw 11 minutes after the start time.

I always feel bad making other people prepare, sacrifice their time, sacrifice a client, and then not pitching. It’s the second time this year that I’ve missed an appointment. I used to have a calendar up but my children tore it and brought it down.

I still don’t understand how the one OT was so blasé about us going to our first session with her and getting there only for her to say oops, she forgot to state that she’s sick and not working. I feel guilty for days.

But it was worse today. The previous night, I’d been in excruciating body pain. Muscles were spasming and making me uncomfortable too. Then, last night, I was so tired that I was not impressed when our non speaker refused to sleep.😩I was really tired. I can’t explain the sleep deficit. It’s always bad anyway due to sickness or the twins waking me. But it was worse because we had no power and I was cold. The hot water bottle hadn’t been cutting it and I had no means of reheating it quietly so it had been a few bad nights. No extra blankets as I’d piled them on the children’s beds.

So here I am, happy to sleep. Then Ms Non Speaker came after she’d slept for two hours. She needed a diaper change. Then an hour later she was up again creeping around taking cereal from the cupboard. And then she took milk. Saying no, meant screaming and waking the others. What to do? We planned to go back in and take things out the room.

Next thing I know, she is back in my room. I wake up groggy and realise she’s soaking wet.

Girl had showered in milk. The bottom of her sleep sack was tracking cold, sticky milk from her room to mine as if she’d dipped it in a tub of milk. I went to look in her room and she’d baptised the bed in milk too. I wanted to cry.

I’d been asleep, so I hadn’t registered the neck pain. Now I was. It’s cold, I am tired, I can’t get low to change her bedding so I fetch her big brother. I look for more bedding and pyjamas. She screams in protest at having to get undressed. My socks are wet and cold from the milk spread everywhere so I go get a dirty towel to mop it up. I still wanted to cry. She was now up and wide awake so I took more of her sleep medicine for her-leaving us at a deficit.

Finally, I slept sometime after 1am.

Then her twin came to wake me at 4…

I can’t catch a break. My load is heavy. I’m still hunting for a cleaner who will change diapers and meeting weird and wonderful people. And that’s another topic. The people who break my heart job hunting. But I have to be communicating with the applicants all day as I don’t have a replacement and this Sunday is Vi’s last day. We are running behind l, the new person was meant to learn from Vi and our daughter be comfortable with her before Vi suddenly disappears from her life. Well, that lack of time is a long story caused by my daughter’s birth mother.

Long story short- she stole money I specifically sent for transport after also having given them the regular amount we had been giving, didn’t pitch for work and had no remorse. They KNEW it was for transport but spent 99% of it in one day, and the other 1% on the four days she did come in. And that’s after already not having come on the first day she was meant to come to work because they didn’t have transport money. Don’t ask what happened to the money I’d given them earlier in the month. Don’t ask me how they plan to ever work if they can’t even save MONEY given for transport and use it elsewhere. No other jobs give money in advance. They are the epitome of the stereotype about SA Blacks. And I hate that for our girl who was not impressed at all with what they did and the lack of remorse.

But hey, we can afford to buy our girl a bed now instead her only being on the mattress with my no longer enabling them. That was the worst part for me. The money was a sacrifice. But we thought they were desperate. Clearly not. They are happy in their poverty and handouts. Here’s hoping the lack of handouts prompts them really want to work.

Very disappointed. I hate entitlement with a passion. I hate it when we think people’s gifts are owed to us. I hate stealing. I cannot abide a lack of morals.

So I have all that hanging on me plus appointments for my very unwell 11 year old who needs iron infusions (aka drips) that I just plan for her and also plan genetic testing for my son. R8160.40 for the first set. More if these ones don’t give an answer. My mind is everywhere with remembering different appointments and meetings, electricity people who keep not fixing our electricity and allowing us to have power… I cried. I can’t even finish one telephonic ‘interview’ with a candidate without needing to take 20 minutes doing something else.

The candidates are not working out at all. One told me to watch the children so that our eloped never leaves the unlockable gate again. I told her that clearly she doesn’t know how children act, not what homeschool life is like if she thinks you can leave all other duties and be roaming around following each and every child to ensure they are safe and also so that one doesn’t run away. You’d need to wear an adult diaper and never cook for them, never go look for medication or the next supplement to give. So she was an immediate fail. As are many.

The two most hopeful ones neglected to tell me they aren’t even in the province until after I said I want to now organise a face to face interview and run through of the house and meet the children.🤦🏾‍♀️🤦🏾‍♀️🤦🏾‍♀️🤯🤯💝

And time is running out. I’m not meant to lift, bath, dress. But who will if I don’t?😔

The rebuking of the husband that I mentioned. I went to ask if it’s true that he was ignoring our child when she was trying to get his attention. He didn’t peel his eyes off his phone to even answer me. Then he called her and asked her to tell him when she had wanted to talk to him. Gaslighting her into believing that if she at age six, can’t say ‘when’ she had been talking to him, then he didn’t ignore her! I was so angry!

I told him the when doesn’t matter. The child agrees that she was trying to show him the drawing and he wasn’t listening and that he hurt her feelings. Period! “Knowing when, when, won’t change anything.!”

Who would regret saving their children from as much neglect as possible? No wonder children eating with knives are missed if even a verbal “Look, daddy, look…” is ignored.

Not me. I will regret nothing except having assumed the sermons on the pulpit mirrored the heart.🥹

We’ve moved into new territory. And I don’t like it. But could the alternative be worse? I don’t want to know!

She has been refusing to sleep unless her Tablet is with her. How much sleep is she then getting?? What time does she close her eyes and sleep? I do know she either stays up, or wakes up at midnight. One time, she needed a diaper change. That waking, I could embrace. Other times, she goes to the kitchen to fetch rice to eat. The poor sheets are surely ‘shocked’ at how often they are now being washed! After she’s fetched her huge snack from the fridge, she comes to pay me a visit. Last night’s first visit was at midnight.

She snuck out just now (A bit after 10pm) and went to fetch almond milk and rice. What a combo! But fibre is great! (We eat brown rice). In the mornings, there is silence and I will then hear the Tablet again at around 9am, ten am. But today we’ve had no electricity so it didn’t charge. I think we will be in for a bumpy ride. The power bank is charged up but each time I’ve tried to charge her tablet, she’s demanded it. When I left her just now, it was only at 8%! Will she then just sleep? Or will she come crying for it? 😭I do not want to find out!

This morning I was so tired that when her twin came in to also wake me in the early morning, I didn’t have the energy to get up. I just lay there waiting for her to ask for a snack or to ask if it’s “morning time yet.” But I think she thought I was slower because she walked back out and got back under her blankets! Why didn’t you tell me I could do that? I jump up as soon as she bounces into the room.

I had a bad start to the day. This weather is bad for AS. But I’m a bit better now! Let’s see how I wake up tomorrow. And let’s see what time each twin wakes me up and how many times! I don’t even want to sleep because it’s so horrible having it disturbed multiple times.

On the other hand, Twin A came to tell me, while I was in the toilet, that she was going to “take care of” her twin. In my presence. In my room.😉 Thay consisted of her asking for a snack and then eating it in my room. Not sure she did much watching!

She truly wonders around with pots of rice or big bowls of rice.

Autism is sometimes just plain crazy funny. I don’t know WHY, but hey, eating this is much better than not eating at all. And it has to be by hand. She ignores spoons and forks when I give them to her. Her father refuses to eat from the pot after her hand has been picking grains of rice. He can’t stand the thought of her saliva. I’m not so precious. I grew up eating from one bowl with my cousins in the rural areas in December so I’m not phased.

And that, is a glimpse of my current life in Autism Land.

Sleep still eludes many of us.😅

Overwhelmed by court orders too.

Oh reader, Flydah…😅I have had a very difficult week physically and emotionally and psychologically. Yesterday, I ended up having chills all day, and a very runny tummy and it’s still gurgling this morning. My body is staging a revolt.

Let’s start with divorce. You cheat on your longsuffering spouse, you clearly have no morals and no love for her. I knew academically that he is abusive emotionally and sometimes physically to the children. And the past extreme physical abuse meted out to my older children will never be effaced from their psyches. But I didn’t know he hated his children. I know, I’m slow. Live is kind and self sacrificial.

Love provides. I grew up in a culture where even in those small apartheid matchbox houses, adult children of all ages lived with their pensioner parents. I saw the small pension being shared with everyone in the household. If you had no job, at least you never wanted for shelter and food. Even if you had a job, you still could find accommodation with your parents.

The Court Order my attorney wrote up includes the South African law’s same principle. You must provide for your ‘major dependants’ (aka the ones older than 18) until they are employed. He is refusing that, amongst many other very just orders. He wants to stop as soon as they graduate. What kind of ‘Christian’ father is that!? We don’t have a welfare system. There is no first mate if a job. Even his mother took in her adult sons even when they were drunks she had to beat to stop urinating in cupboards when drunk. How could he be worse than she -his role model-is?

I never knew I’d ever have to fight for my children’s rights. But there are aspects I will have to fight for because he refuses to budge. He sent his refusal via email. I responded. He told me he didn’t bother reading everything I typed. He has been telling me that for years. I wasn’t surprised, but I am sad. I’m tired of fighting, guys.

He has done exactly what my rheumatologist feared. He’s making me sicker than ever.

And right now, is not the time for that. I’m still wrestling with my failing eyes. It’s scary suddenly not being able to read the folder names for educational videos I created, large print on the TV. I am terrified and fighting already. Don’t forget AS and the others.

Then I’m fighting with being gas lit. My 11 year old has more than just autism, PDA and ADHD.

She did this in anger this week.

And then had the guts to tell our helper that she must sort it out.

She also went on the rampage yesterday too. And it’s always after she has been found out, always after I catch her doing wrong. Always. Be it calling out a lie, asking her to stop bullying her little sister, or taking the Tablet she’s found a way to get online with.

What is scary is that hours after she had pulled everything out her wardrobe and thrown it around, she couldn’t recall exactly what she’d done. She came in tears accusing Vi of having broken a ceramic gift I’d given her, a letter to My Daughter that she cherishes that was now broken in two. She wept terrible tears of sorrow as she asked me why Vi would do that. I told her she had done it when she violently threw things around and onto the floor. She couldn’t believe it at first. But accepted it.

That is a terrifying rage.

And she’s only 11.

What will she unleash as she gets older? What form will the already bad bullying take? Or will she mature into a kind child? I don’t know. But I believe she is definitely more disordered than people want to believe. What our other paediatricians saw is true. But no psychiatrist gets it. The malice, they trivialize because she tells the truth after the fact. They don’t care that she enjoys recounting the bad things she did, like the shoplifting. There is no red flag in how wonderful the memory is to her. My goodness, one even said to me it’s ok that she doesn’t have a conscience as people can be taught to have one.

There is no autism or ADHD trait of malevolence and lack of conscience. That’s something deeper and ugly. And I’m beating that burden alone. The one who hates his children doesn’t care so I stopped trying to share long ago except for explaining where I’m going if he’s home and I’m taking one to have their blood drawn.

And on that note. R8160.40 is the first for the first genetic testing we will conduct on my son. There’s a deeper set of genetic tests if this one doesn’t show any chromosome issues. Last year, for the second time, his physical features took me to Klinefelter syndrome as the closest possible known genetic syndrome. Some use an apostrophe s ie Klinefelter’s syndrome.

This week, as I discussed his next updated set of educational psych assessments, we discussed that he seems to have reached the limits of his abilities. His writing hasn’t improved since three years ago. And that’s with OT and a handwriting curriculum for children like him and our 11 year old. We then wondered if he hasn’t reached the ceiling cognitively, academically…And that plus his not having entered puberty, made her wonder about Klinefelter. When I told her the small testes the paediatrician had noticed, that supported the guess.

But it’s just a guess. So I won’t even describe what it is. Instead, I’ll find the money and we begin the testing and a long wait for results. I just hope it’s not a rare genetic syndrome that’s never been discovered. But we need to know so we know if we can push him any further, if a teacher should even try. Klinefelter comes with a low IQ. You can’t outrun that. You can’t learn what your brain will never retain.

Worried. He’s already far behind intellectually and with his reasoning, and makes no sense. Has no common sense and can’t be sent on an errand and you can’t even hold a full conversation with him. If this is how life will always be, then I’m in for it. He keeps on and says nonsensical things a LOT and I fear one day I will lose my patience. I already do when he lies and claims he had a dream with constantly changing details and things you can tell he’s making up on the fly as he follows me around to relate the useless dream that was the scariest ever but was about a broken down ambulance.🥹The psychological load from each child’s condition is too heavy and getting heavier, not lighter.

And then we have doctrine. The church my husband attends has no doctrine except a manmade one. According to church rules, my husband was meant to have been excommunicated aka disfellowshipped last year. Instead, they welcome and love the unrepentant elder and preacher. They embrace leading others into adultery and breaking families up and in the process, they answer the question I asked online.

Does the church love my children?

No.

When more children ask me in frustrated angry tones why their father goes to church, what he ‘gets’ from it, what can I say? The more he goes there while continuing to be worse and worse, the more the disdain for the church that worships him grows. And I can understand that.

My worry is that together with the church, they will discard God too. Church doesn’t fix him. He’s comfortable and happy there, so clearly they are encouraging him in his relationship with his mistress. Who would want to attend a church where nobody cares about the cables and bicycle chains your father beat you with nor care about the damage he’s inflicting on you as his children?

What kind of god allows this evil to continue in a place there is meant to be safety and nurturing of the young?

This is where my heart breaks. I’m angry with them. They have no care about God’s reputation to keep you from falling, nor the harm they and their idol have caused me. But when it comes to my children and the irreparable damage they have created, I want to cry. They are meant to represent God. God won’t accept this in heaven. Why are they accepting it on earth?

Shame on them and shame on their idol. I wish the earth would swallow every single spiritual abused on the planet and allow us women to run everything. We won’t like each other, but we won’t abuse each other the way the men have been doing so in our homes.

What an ending to a horrible week. He’s pushing his children away from God. And I am furious.😡

That floor is not my friend’s fault! That’s all ADHD combined with PDA and normal childhood hatred of tidying up.

Last year mid October when I found out my husband has been back with his 2016 floozy since 2022, I emailed to let them, the church elder who idolises him, and my best friend know that I finally had confirmation of what I’d been asking since 2024.

As you might recall, thereafter, my friend and I had a useless back and forth with the elders. Actually, it was useful. Now we know what principle really means to them.

In late October , I asked my husband if we could throw a little birthday celebration for my ‘copied in the emails’ friend on a Sabbath.

He didn’t reply. I had no money. So I didn’t.

But, this time I didn’t ask anything. I had enough money -his- to buy extra food. So I invited my friend to celebrate my son turning 21 yesterday. And she came.

I didn’t even tell the children till she was 10 minutes away. I didn’t want him to know. I wanted him to have the knowledge that someone who is disgusted by his acts is in his space and he can’t suddenly plan an escape.

When my friend started asking why they were silent when certain men do wrong, they-without permission -forwarded to him, our communications to them about their needing training on how to handle wife abuse. We didn’t care that he knows, but it is again another sign of how low the elders are because that communication had nothing to do with him. My request had been simple. Ask the pastor for training so you don’t kill more women’s souls. My friend’s response when they didn’t acknowledge that was to ask them why they are doing nothing. Nothing to do with the my marriage, everything to do with them encouraging and supporting abuse and adultery.

So, my husband knew she not only knew and had seen his emails to his floozy, he also knows she’s consistently hated his acts, character and the fact his church supports and encourages him to keep being a hypocrite.

I needed her for many reasons. As things become all riled up with divorce agreements and disagreements, I needed an anchor. I need someone who stands for right to visibly be in my corner. And she came.🥹

Oh my dear readers! You have no idea the joy my children expressed this Sabbath. They have never ever laughed so much and for so long in my hearing. Ever. The laughter tickled me and also made me so emotional. How many times have I been thankful that she is for them exactly what they need?

She might kill me. But this blog doesn’t have my real name so maybe nobody she knows wil see this.😅

To be seen. This is all I had asked for in a video I am yet to have time to edit and post. And she saw.

She was the answer I had said I wanted. Let me not spill the beans because it’s still relevant to other special needs caregivers so if I type it out, it won’t be worth watching. So let’s must say she is not what the doctor I took my 11 year old to, prescribed.

She’s better.

For a few weeks now, I’ve kept a silent vigil over my eyes. dryness causes a gritty sandy feeling in the eyes when you wake up. When I went for my follow up eye tests at the opthalmologist’s, blinking between each test made no difference at all. I had no tears. En route to the rheumatologist I realised I’d forgotten to put eye drops in and didn’t have spare in my bag. So I played sad music (Christ on the cross ) and cried to lubricate my eyes.

That’s crazy! Unimaginable. And something I’m only sharing now for the first time. That’s how intense the dry issue has become.

The eye appointment didn’t go super well. To put it mildly! One of the intake questions they ask is about glaucoma and other heritable diseases in the family, so I told them my mother had glaucoma. Thus began our regular check to check the pressure in my eyes. It’s not great. And has gone a bit worse since four MONTHS ago. MONTHS. Not years, months and I’m only 45. Really??

But oh, there’s more. I have another cause of blindness thanks to dry eyes, but that one is treatable. A horrible treatment though. A treatment I can’t fathom having. Would YOU want to have your eyes clamped open while awake for an hour to an hour and a half while they scrape off the top layer of your eyes, put drops in to keep the new improved shape (my corneas’ have changed shape leading to the vision loss issue) and then shine laser into your eyes with periods of long waits between each of the steps? And then go home and be in excruciating pain for five days and nights a pain you can’t ignore unless you’re asleep but then your children don’t even let you sleep even at night, let alone day time?

Me neither.

And what have I done yet again which has caused this? Woken up and flown straight into parenting instead of self medication.

Mixed up colon cleanse meds for our non verbal daughter who is back with fecal impaction again. I gave her meds to sleep after her abdominal pain woke her early this morning and when she wakes up, the terrible way to get her to drink it – a big war that might not be won. I cannot believe we are back here so soon. For weeks it’s been building up and this one I didn’t keep to myself because. Usually, when nobody asks, I don’t answer unasked questions and tell but this worry is not about me.

My daughter’s birth mom said something so profoundly beautiful as we discussed her experience with the narc who fathered her last baby and then became the epitome of Satan himself, just in Malawian form. She said my narc will know that I have people who support me now. Ie. Her in my space with me daily.

I found it extremely sad that people I have hired are the village my children and I belong to. The lawyer’s assistant, the children’s aide who is the only one in the household who asked how the rheumatologist visit went, our outgoing helper who wanted to rip her uniform off when I was going for surgery as she was tired and angry at my attending important procedures and appointments all on my own and now our incoming helper. Ammy’s birth mother. We discussed how the children are mistreated, the things I’ve been subjected to and she noted that now he’d know that I have someone in my corner. I’m no longer uncared for in my own home. She and the children and their special needs facilitator are there. So, I’ve been sharing my concerns about our non verbal angel’s deteriorating health. And her facilitator saw it first hand when she did no OT at all yesterday. Did a big sweep of the room and items and even neighbour’s homes as she looked out the second floor window outside and across at a torn gazebo, and announced very clearly thereafter, “Get ready to go!” And left. The trio there alone was longer than her session. All because of PAIN and discomfort. And I KNEW the treatment plan we were given wasn’t good enough. I wrote as much to the paediatrician on May 25 before we now reached this week when she now has had no movement at all. Impacted. Again. I will text her helper. I don’t know why because there’s nothing she can do. But I’m sad. And she worries and is always available sometime in the day to reply.

But they aren’t there in the evenings, on the nights the children wake up too early in the night, in the busy mornings where children’s needs and medications take precedence over my own health. And I then risk my eye sight.

When I go to bed, I am supposed to point thick ointment in my eyes. But the Rinvoq knocks me out while I’m still planning on being awake and I wake up when it’s too late. Already dry through the night. Then I’m woken with a fright by a child bashing the door open and demanding my attention immediately, and my needing to give that attention so that the other children don’t wake up. The other part then gets forgotten. I’m meant to put eye drops in as soon as I awake. But I’m busy when I wake up. And a morning passes. Like now.

I’ve only put the first of five doses of eye drops in at 9am but I’ve been busy since 5am.

Due to her extreme weight gain, and the need for hormonal treatment for the PMDD Amarissa has, I had to take her for blood tests to test thyroid function, test for diabetes via pancreatic function, insulin and glucose and more.

The admin lady saw the doctor had written “adhd and autism weight gain” and wondered if she’d be ok with the blood tests as there is only one phlebotomist on duty. Thankfully, our girl not feeling much is a blessing when it comes to that. She was definitely not one to need another staff member to hold her down.

I thought I had explained adequately why she was there, but when she loudly asked, “Why are you taking my blood!?? I won’t have any left!!” I wanted to hide. I’m really not an uncommunicative mom. She knows. She has had blood tests before! But it was also funny. And cute.

We are back home. And we celebrated the first part of the anniversary of the day my son was born 21 years ago today.

They lost the sellotape hence the very obvious taping. They were so so excited. All week! I shouldn’t have told them so early.😉😅

And thus it always is and always will be on this earth.

A mixed day. Worry and happiness. Blessing and a curse.

And the vigil over my eyes. I wasn’t wrong. It’s not the “Ugh, I need a stronger prescription lens”‘decline I noticed. It was like blind spots. Darkness descending. Moments when things are invisible especially for my left eye. Times I drive and I have to try unblur the vision so I can see the road sign only 10m ahead.

My vision is slowly deteriorating and we have keratoconus and glaucoma to blame. I’m at a pre glaucoma stage where the vision is declining and the pressure worsening. But also, the dry gritty feeling with its blurred vision causes reflexive scratching when a child wakes me up and I need to find my glasses, socks, gown and get them quite very fast. Look up cross linking for keratoconus. And find what real patients have gone through. THAT is the scraping I referred to. And glaucoma? As we all know, there’s no cure for glaucoma caused blindness.🥹

So, we wait and watch and then after the procedure, we will then test my prescription strength, as obviously that too has declined, so we move onto stronger glasses and contacts too. The cross linking usually stops the blindness from the scratched cornea by keeping the better shape that they create when they scrape your top layer off your eyes and laser them after putting vit B in. We reassess in October then decide if we do it then or if my eyes retain the current shape at the very least.

Happy birthday to me for having my first ever child 21 years ago!😆

Today was a hectically long appointment for my girl, A. She’s going to have a bunch of blood tests to be sure it’s the Abilify causing weight gain, not thyroid. Iron cos she had super low iron even before puberty hit, so she might be joining me in iron infusions if the double dose iron hasn’t helped her. Also testing how healthy she is given the weight she has. And then I’ll go back next month without the little patient to discuss which pill to put her on depending on her fasting insulin and fasting glucose and all that stuff.

It was long but productive. Lots of ‘stop, look into each others’ eyes and crack up laughing’ moments. The absurdity of the behaviours where you both think, “Well, she doesn’t have a conscience yet anyway so THAT solution won’t work..” Or laughing at how home is calm until she herself causes the trouble.🫣

The doctor suggested she go to her room when angry, to calm down. But she said that’s a bad idea because she breaks the light switch, tears her clothes with her teeth, breaks doors… At least she has an accurate inventory of the damage she inflicts on the room.😬

She made me smile with the paintings she took pictures of. She’s such a lover of beauty.

And then, as always, the question came to me. I’ve put great supports in place for her, give her different places to go to and people to converse with, but where is my own support? Who is my village to watch the children and I rest on weekends or holidays. Who takes the children away for some hours so I can enjoy a quiet Sunday morning?

I told her I have no village.

And of course then she strongly commanded to have therapy as all this neurodivergence around me is stressful and draining and AS will never calm down seeing as stress triggers flares and I have nobody here to share the emotional and mental burden with and give me proper rest.

She suggested online meetings so I don’t kill my body traveling then sitting.

I don’t know. Maybe after the divorce.

Somehow, God will have to provide a circle that will enfold us all and give me chance to breathe. Because my mind is stretched out. I feel like I’m two seconds away from tearing at my hair and screaming and screaming and screaming..and never stopping.

Each appointment for each child, each bit of research for each child, each interruption by each child, every fight over something so trivial even the others complain, takes a lot from me and I’m barely there to begin with. I need a miracle. Or a village. But a therapist will have to do. One day…