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.
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.
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…
Two Sundays ago, Amarissa asked her father to buy a specific type of muesli that she and the others really enjoy. His reply was, “I’m not going to Pick n Pay for that.” Pick n Pay is in the same shopping centre. But he can go get a whole bunch of weird running supplements and powders. But not muesli for his daughter.
This week, she asked for granadillas aka passion fruit. Again, he refused. He said he didn’t have money for that. But he has money to buy himself pudding from woolies with more than double the cost. I have ended up buying them a pudding to share when he gets himself one. And..I ordered granadillas for her when I needed to buy other stuff.
It’s so hard to be honest, because we are told to be silent. And for a long time, I assumed everyone had the same kinds of issues. After all, I’m not perfect. So when I’d share good stuff, it never dawned on me to share the other. So people assumed things were great. Or, not so bad that a child would be denied certain foods.
But, you decide for yourself.
In the meantime, I’ll tell you they finished the entire pack in two days. And little Miss Twin A recycled (one of her favourite words) the shell and used it as a bed for her Lego baby, ‘Princess.’ She sleeps with her next to her on her pillow.😊
When my girl asks for something healthy, I will give it. How about you? Would you break away from the ‘submission’ they use at church to starve your child of fruit? Or would you buy it yourself?
When I see the rheumatologist, besides measuring with tapehow far my back can no longer bend, she gets me to lie down on the bed and she manipulates my leg turning it this way and that and putting pressure on my hips when she puts me foot on my other calf, bending my knee and pressing down to see how my pelvic bones respond, to test stiffness etc.
After last night, I lost some of the confidence I had. Even though I knew, I didn’t want to accept.
This is simple. It’s not weight bearing. We already know my right leg can’t always carry me and a sharp pain shoots through my SI joint as it collapses. I know that lunges hurt and cause weakness after I do them. Same with squats. But stretching my glute like this has been easy. You just felt the muscle stretch nicely. Keep the stiffness caused by AS away for as long as possible.
So what happens when you can’t? When stretching the muscle means twisting a bone that’s actively Ankylosing aka fusing at the joint? Pain. Extreme pain and a dull ache radiating through the entire buttock. A sharp pain that begins that night and has become worse and stiffer and caused greater weakness the next morning.
Is this it? Have I lost yet another mode of movement? Or is it a flare? But then after a flare (a sharp rise in inflammation and symptoms), the healing process causes more bone to build in the joint or among the bone. Either one is a negative.
I am wearing gloves as I type. I am so stiff and in pain. I keep telling the children I need to shower. But the pain of standing, the fatigue I’m feeling. I can’t. So I type and hope to gather the courage. And no, a bath would be worse. Sitting on bones that are swollen from inside is painful on cushioned chairs. Imagine on a hard bath.
Yesterday when my attorney sent evidence he’d filed my divorce plea, I prayed. I don’t know how my future will be as the disease causes more and more disability. I have my son for now as he studies, but if he gets a job far away, who will help me care for the children? I prayed for strength, for the enemies who rejoice when families break apart (my mother in law who’s seen off two daughters in law already cos her precious son is also a philanderer and she’s happy to have his undivided attention) to at least know I cut the cord. She must know her son is not admired by those with morals and his cup does get full just like it will or has for the Heavenly Hand also holding a cup. I prayed for wisdom and strength to fight for the monies he’s given away instead of paying for his children’s home (mortgage ). I prayed for the justice my friend and I have not seen in the church that claims to serve God.
What a scary time in many ways. The physical pain, debilitating and making me wonder if I need to get my walking frame from the garage is unbearable. Nothing is taking my mind off it. My fingers are stiff so I’m typing with only one finger.
I hate that my range of motion is being controlled by my disease, not by my hopes.
I’m being stripped of my abilities bit by bit.
And that’s more frightening than getting a divorce and being even poorer than ever. Medical costs are extreme! Very bad. Very high. But we will be ok just like others who have gone before me are. I don’t know them, but surely somewhere there’s a constantly in pain homeschooling mother of autistic and learning disabled children who is divorced.. in Africa without the benefits (welfare) system of the country that had colonised it. (UK.)
Oh my word, how I hate Sjögren’s disease! Because we don’t have enough saliva, our taste buds suffer. We either have distorted taste where we don’t taste as we should, or even NO ability to taste at all! That’s been my problem.
I used to eat vegan gluten-free pizza maybe once a month. But now , they all taste disgusting. At first, I thought the stores had changed how they make them… Then I found out what the lack of enough saliva does.
When people read ‘dry mouth,’ they have no clue the ramifications. And when I say “people,” I mean ME!
The only thing I can still taste properly is chocolate.🤦🏾♀️ Do not ask. Everything else is just to be endured.
That was my introduction to how I almost threw out a whole big pot of pasta. I made it with pesto but the taste was AWFUL! I used to enjoy basil pesto. But I was convinced I had made such disgusting food that nobody would eat it and more importantly, it wasn’t fit to be eaten. It would be punishment to make them eat it.
But first, I asked Amarissa to taste it. I wasn’t going to eat it as it’s wheat pasta, so I figured those who would, should. Just in case. My brain is so slow that as I type, only now am I thinking, “But surely the fact that she ate it when it was on the sides of the blender when you mixed it with spinach, the fact that she unscrewed the bottom of the blender to get more of the pesto from the base beneath the blades was proof enough that she she liked it! What’s wrong with you!?”
She said it was great.
But I wasn’t sure and asking my already finicky others who don’t eat all food anyway wasn’t worth doing as their tastes don’t reflect those of the majority. I waited for big brother to get back from campus.
He loved it.
I was relieved! I’ve been having back spasms as my body deals with worsening AS pain and my muscles suffer. To make a whole new plan after 6pm and a busy day straining my body was not going to be cool.
But man, I can’t trust my tastebuds. I see why I’m shocked they love the soup I hate when I taste it! It’s not them. It’s me!
PS. My attorney is getting ready to serve the divorce summons. The sheriff has ten days within to do it. I did not marry to divorce. Alas, I married someone who doesn’t think lies are bad. So he lied on our wedding day and thereafter. It’s weird. I’m asking the children for their maintenance plans -when you’re older than 18, you make your own requests, not your parent. And looking at them and editing them. They’re so sweet in how little they think they deserve. Eg R80 worth of data a month.
I’m sharing this part of the process because I have nobody who divorced so I didn’t know how it worked. Now the next person dealing with an unfaithful wife or husband knows how it goes. Give a broad overview of the maintenance you and the children expect and it will be added to fhe summons. So you’d better start looking at your costs. Not easy, because you have to separate YOURS from the grocery you buy for everybody.
Little things that took me almost a week to put together. When you’re creating your exit plan, start looking! I told him I bought a pressure cooker and the microwave now, in preparation for being divorced and not having the money to buy one thereafter when we now have to pay for yet another home’s rent, water etc. He didn’t complain. Which is good. I’ve eaten supper on many days only because Woolies has ready made food and I don’t have to stand over a pot when already in pain. (Seeing as we eat separately with my meals having to be IBS friendly.
(ETA I posted a lie!! I got a bladder infection and had to quit! And then I got an abscess in my groin and had to quit again. Wow, my memory is SHOT!)
Our ausome non verbal angel and her traitor domestic worker who is leaving next month.
The nerve to be leaving to take her children from grandmother and raise her herself! Who cares that she misses her children and they need her?😉
It’s been hectic! AuDHD lives are non stop as it is. But our ausome non speaker has never been well since December when her symptoms began, then hospitalisation, then discharging with incomplete emptying but her hating the medication to help her out…And two flu attacks back to back. Not a cold, flu. She’s not rested. Which means those who medicate are trying to get even more medication into her -and failing because she clenches her teeth together and how do you fight that?
Once again, this disorder deserves to be called a disorder in the way it manifests in her. She has no understanding that the stuff I’m giving her is to help her. To us, it tastes ok. Ok one is horrible, but before the flu she was allowing me to syringe the not tasty one throughout the day into her mouth and refusing the other completely. When the first flu bout came, that ended. She now takes almost zero meds without a fight, or it not happening at all.
The children came down with it too. Then they started recovering, though our current big girl of the household- seeing as big sister is away studying-was still coughing.
Their dad came back with a bout of the flu. And this one was bad. He kept complaining, I kept telling him to then take anti inflammatory pain tablets! He even went shopping with chills and sweats that made his clothes wet. Then the children fell ill. It was and is sad – sore throats, headaches, respiratory problems, coughs, horribly blocked noses, nausea, weakness, fatigue, body aches, painful lower limbs, “I can’t walk. I think I’m turning into a grandma” my poor six year old wailed as I had to put her on my back and put her back in her bed.🥹
It’s been the worst ever. The only ‘solace’ is that it’s not just us. I’d read an article about how flu season started too early this year and is worse than other times according to suffering patients. I was so relieved that I wasn’t ignoring some crazy pneumonia or TB! It reminded me of some other time I started doubting my ‘Florence Nightingale’ routine and thought maybe I should have taken them to a doctor. I knew though that there’s no actual real treatment they can give that I can’t, but for a day, I thought I was ignoring pneumonia. Then the next day recovery began. I thought I could be treating a strain of the flu when it’s something else completely…
But then three got it. And my anxiety grew even as I sighed in relief. Less time to rest due to treating everyone and also giving their normal meds, means less rest. Less rest means lowered immunity. And to fight AS, I’m already on treatment to lower my immune system so it stops fighting my body when it should only be fighting disease and not me! If they get it, what if I get it? We can’t afford that, not NOW!
Nobody wants the awful flu the children have. Nobody wants the flu when they are the only caregivers the other patients have. I’ve been there before. I made the GP angry because I ignored how bad I was because I was worried and helping others who were actually better off -good thing they don’t have fibrotic lungs. I also know how desperate one feels when they’re suffering but still have to force themselves. I live it daily with AS. But if I get sick, I have to go off the AS treatment that reduces the severity of the disease so that my body can try fight the sickness. That means double torture and still no rest. Stronger AS symptoms added to the flu. Noooooo!
But also, we’re about to do my bloods. My red blood cells have been decreasing each time. We need them to stop that! We need to know exactly how badly Rinvoq is impacting them. We need to test me while I’m on it. We need to check that my liver is still ok. Two more members in the group had to quit and try a different treatment because it almost killed their livers.
This AS patient needs proper info so we know the way forward.
And it’s anxiety you hold inside. You don’t tell your children. You just try bottle it up and smile while you hope your check up hurries up so you can know you got tested and seen while on your meds.
I went to fetch ironing and the lady handing it over had the flu too. And like my children, she’d gotten better and then WHAM it returned with a vengeance. It’s barely winter. It’s clearly going to be a very long one.
We’re in for a tough ride. But for now, in the AS world, we thank God that a year came and went and I didn’t have to go to hospital multiple for IV pain relief as I did in the previous year!! Here’s to more years of Rinvoq! Please. And no flu so we know if it’s harming or only helping reduce symptoms which is good enough for me!A
As for Vi and our ausome angel outside…
The whole thing will shake like it’s going to be blown over, and she won’t care. So we take it in turns to go keep her safe for her ascent up the slide. I must say, she’s grown stronger! She couldn’t climb up before. Now she can -depending on the shoe! Her arm strength has improved! 🥰But wow, doing this when winter is starting…🤦🏾♀️
She laments when sickness comes twice to visit the children and she lamented yesterday despite her own sickness. She’s one of those who has internalised how horrible life is for neurodivergent, sensory sensitive people anyway, without adding the extra sensations that come with being unwell. I appreciate that!
First, our non verbal baby girl has been unwell since December and hasn’t gone back to stable yet. That’s a very long time for a mother to bear an extra worry. Include the hospitalization after multiple Trauma visits and you have a mom who needs a rest for her mind. I wish I could forget my worries about her just for five minutes.
Just as the children were recovering from a very terrible and long lasting flu, their father got sick and passed on a different kind of flu. Lots of malaise, cough, nausea, fever and chills. In that state, he insisted on sitting in the car with our non speaker even though I begged him to NOT do so. Our big son would sit with her all day because he has his phone and it saves him from other chores, so can her siblings. But I think he wants to play victim to his floozy -that’s what the psychologist thinks is the reason he sent her confidential assessment of our daughter to the floozy-so he sat ‘with’ her in a normal five seater sedan and she fell ill all over again.
Yesterday, it was her twin’s turn to fall ill.
Micaiah took a blanket and went to lie down with her to keep her company. And they say autistics have no empathy!
But then, he too woke up sick today. while she woke up worse than yesterday. Fever, chills, malaise, coughing. I knew it would be bad when she didn’t come out her bedroom. She is usually the one who wakes up the rest of the children, coming bounding in cheerfully but not as cheerfully for me and my cold feet, wanting a snack to eat. I went to her room an hour and a half after only one child had woken, and she was groaning. That was heart searing. Never should a little child need to groan.
All you see are heads and blankets.
Guys, I only rested at 15:20 today. I’m paying for it big time! I lay down an hour and ten minutes ago for ten minutes but those minutes did nothing. I haven’t felt this much pain in ages! It’s like Satan is squeezing my upper skeleton in a vice and making me feel as cold as if someone poured ice into my swollen bone marrow.
I went out to make myself some tea-first ‘meal’ of the day at 16:20. But then got distracted when I realised it was time for Twin A to get her pain meds. Then the next time, it was time to make a beverage for Twin B. Motherhood never takes a break! But the drinking thing gives me one little positive!
She has drunk properly for the first time in three weeks. She’s still coughing and miserable inside herself so she couldn’t handle the extra sensory stressors (New bird with strange noises in a different room) at OT today, but she drank three proper servings of liquid! Given her bowel issues especially, I am so relieved. You can’t force a strong child to swallow. It’s terrifying watching a child starve or dehydrate. And knowing hospital will see them tearing out drips and tubes like a precious hospitalization. Maybe next week I’ll be able to get more medication into her and try fix her bowel so she doesn’t go to hospital again. A mom can dream! Amarissa also appreciated how amazing it is that she drank!🥹
Big sister is ok in Pretoria, big brother was doing a week of online lectures. They alternate between going to campus vs learning at home. And he is impressed! Remember how he flunked last year because he was playing games, wasting time on Twitch and Reddit day and night? I take his phone at 20:30 and laptop at 21:30. No staying up anymore and being sleepy during the day. I make sure nobody disturbs him during the day and am after him to study when the evening starts.
Also, the lecturers here in Cape Town are also very different to the ones in Pretoria. Pretoria lecturers were awful! Didn’t pitch up after students got there, only spoke for ten minutes of a three hour lecture…Our Cape Town guys are all South African and know what they are doing and how to pronounce words in English. The lecturer for one course warned the children that his subject is difficult so they can contact him via WhatsApp any time if they become lost and confused! The lecturers actually use the lecture time, mark tests fast, keep a record of attendance and are passionate about what they are teaching… And that has motivated my boy too. Guys, he’s turning 21 next month! What will I call him? He’s not a boy anymore!
I’m happy for him.
And Ammy? Miserable and sad. Twin A might as well be her twin, the way she needs her. She even went to the bedroom to read to her but poor little mite couldn’t focus so she stopped. “I don’t care if I also get sick! I miss her!” was her cry when I reminded her not to breathe in the same air coming from her sick sister.
So, she busied herself making this for M plus N (Micaiah and Naynay). Naynay told me, “I think she really wants me to get better! She gave me this!”🥹
I hope for better days for my children. I hope for less pain for myself and more strength and TIME! I’m meant to be working on what I want for divorce maintenance but he has always done all the insurance applications, he pays the eldest two children’s fees, buys them textbooks even when they are the wrong ones…How will I get time to study everything I have to do make up something useful for the attorney!?
