Author: Grace by any other name

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!?

Hmmm…

Doing my Ankylosing spondylitis ‘slowing of disease progression ’ exercises is becoming more difficult. My one side does not agree to go down much. And doing normal exercise is becoming more frightening. After a lower body workout, I cannot walk properly at my hip and right SI joint. It’s like I will collapse because my legs don’t want to move. Not muscle fatigue, but the actual pelvic area is stiff and weak, shaky and doesn’t obey my commands me to carry me and walk to the bed!

For this bridge above, I rely on my left leg to hold me up. My right one just sinks down. Doing marching bridges-where you’re basically walking while doing a bridge, means a sharp pain when my right leg is holding me while the left knee comes up.

At the same time, I hate that I am in so much pain that I cannot exercise (normal exercise) as much as I want to. By the time night time comes and allows me to -I asked the children’s father if he could do his 5am treadmill running in the evenings as the time change doesn’t impact his body’s ability but it hasn’t happened-the pain has built up through the day and I’m too fatigued and sore to do it. I take pain meds but they don’t reduce the pain.

I wonder if the children were in school as the rheumatologist said, if I’d be in as much pain by night time. One evening this week as I was writing out the work the aide was tk do, I ended up writing, “I’m dying. Just do the next sections.” (Usually I look at weak points and create or find worksheets to reinforce the areas Amarissa and Micaiah struggle in that he deals with.)

But more than that pain during exercise issue, is the reduction in mobility of my right side that is worrying me. When I am fused, will I be able to bend to sit? Will my leg give way even more? Will I actually fall as opposed to being able to stop myself from falling when it gives way now? It’s been years. How effective is the Rinvoq in slowing this process down? But, when you are fully fused, you feel no more pain. Which is worse? Suffering no through the day and night? Or being permanently unable to move that area? Why do I have to ask myself these questions? Why does AS exist?

Any kind of lunge is bad for me. Doing a side plank on the right side is painful for me. It’s like afterwards a nerve is pinched and making me numb so I can’t feel my leg and stumble.

This is all insane and terrifying. How will I survive when I’m living with older, stronger children? Already, our non speaker has crazy strength. Remember the very experienced paed who’s never had a child as strong as she is yet she’s only six!? One mom’s now 21 year old has broken her leg. What happens when she’s 10 and twists my neck like she tried? Especially given the fragility of AS bones?

When my father started getting super sick, I took him for bone scan way before I realised I’d also need one. The amount of inflammation in his body was horrific. My doctor friend who gave him the lifesaving prostate injection, bringing her White Afrikaner female self to Gugulethu to administer it, prescribed diluted morphine for the pain.

Y’all know the pain where I tell God I just want to die? He’d lived it for 40 years, always telling people it was a car accident that caused his back and leg pain. Like me, he also couldn’t sit in church. But he couldn’t even barely handle lying down for the bone scan and I knew then that it wasn’t the accident even before they sent me the report. (Another reason I’ll never have another injection into my spine. Lying there on that hard surface for temporary minimal gains…)

He suffered. His shoulders fused by the end of his life, so two men had to try help him get dressed for my mother’s funeral. It’s that fusing that scares me. I don’t have the luxury of people helping me. I am the one helping my other people who are getting stronger and scarier. She doesn’t want her nappy changed sometimes, I’m not even meant to change it nor dress her anyway… But sometimes I have no choice. A live in helper would be a dream! But until then..

My father gave even when he should have been resting. Their ‘caregiver’ would disappear and they’d not tell me until weeks later when he wants me to track the person down to return his car. And so my father would be the one washing my mother’s soiled bedding. (She took months to accept adult diapers but with nobody to change her anyway…) He’d be the one I find don’t ironing when I take grocery to them. He’d also be the one telling me not to be crazy and buy them new dish towels when theirs are fine (full of holes!)

I am glad my father is in no more pain. His other children from his first wife took his morphine away. Gave him herbal pills instead. This is the couple where the wife told me I’d be healed from Ankylosing Spondylitis if I saw her counselor who traveled IN HIS MIND to Ukraine and spoke to Zelensky🤯🫣Where were they when I was killing my back sitting in Groote Schuur hospital queues for his cancer appointments?? Where were they when I paid R13000 for a bone scan for him?Africans and morphine! Were they there when I sat with him discussing with a doctor that we’d need to cut his testicles out to stop the hormone driving the cancer? But they were there to remove the one painkiller that helped him move around with less suffering.🥹

Given by the very same palliative care, cancer specialist doctor who helped him have many more years of life and allowed him to wait the long hospital waiting times for THAT surgery. “Yes,”my 92 year old father said, “Cut them off, I don’t need them.”

If I could surgically fuse my SI joint like many in the States are doing, AND be guaranteed it would work, works for most in taking that pain away, I also would tell them to cut me up.

And lastly, I am also glad my father is dead because only now will I have no pressure on me. I have a sibling who’s a terrible drunk who makes babies everywhere. Old church members have seen him with his latest floozy at the public clinic, having a pregnancy check up. I have nieces and nephews I don’t know about. His wife said she wanted to divorce him. My father often told me, to phone her and tell her not to divorce my money finishing, adulterous, ‘does he not have STDs?’ brother.(She has a child my age that she had as a teen. Why would I tell a grown woman what to do with her lousy husband?)

Ironically, she had been in the UK all those years so it was the children telling her about the women they’d find, and the beer bottles. He told me last month that she’d back in South Africa and living with him. No comment.😅My father would have been happy!

And my mother would be firmly on the cheater’s side too. After all, my solely caring for the children day and night and worse so when their father travels, wasn’t taxing. She would feel sorry for him when just once a month I’d leave the babies with him and take grocery to my parents as a form of me time. I did nothing in her and his mother’s eyes. Apparently keeping children alive, fed, taken to hospital, EDUCATED, is nothing. And so she too would have come down hard on me like my father would have.

Now, I have sister friends who get it. One of whom regrets having ever told me NOT to divorce back in 2016. And no contact with relatives to pressure me. No contact with church elders who pressured me last time to act romantic towards their cheating idol. “I used to admire him…I still admire him.” Good on you, you should marry him then, is what I should have told him.

The irony? He was upset when his wife received birthday money from a man-the man’s wife asked him why his wife was talking to her husband and receiving gifts. I think it was R200 airtime . But somehow, my situation-“It was just a loan!” (SSaid and ‘repaid’ after I found out about the R19500 a MONTH to his floozy) evokes no anger. Sexism is …

I see why more women now prefer to just worship God alone.

This is the part I cannot and do not and never will, understand. This is the part that makes no sense to me and doesn’t allow me to bridge the gap between me and others. It is the thing that doesn’t allow me to be as giving (of my life) to them as I am to one who does get it and doesn’t leave me baffled.

There is a book by our founder, called Desire of Ages, a play on how Christ is the desire of all nations, according to the Bible. It is a book even the most disinterested pastor sometimes tells church members to read. It doesn’t have any of the practical steps one should take like Paul’s writings had so it’s a ‘safe’ book for them. It doesn’t talk about who should and should not be a minister, a member, a missionary…

But it’s the very book that changed my life when I was 16 years old. It is the book that opened my eyes to the magnitude of God’s love for me. And because I knew how much He had loved and sacrificed for me, no sacrifice was too much. I would give up anything to tell Him, “Thank you!”

But why don’t our church members do the same? We have so many very plain commands in the Old and New Testaments about how to show our love, show Whose kingdom we are aligned with, how to be “holy priesthood and a royal generation.” But we don’t obey. We are not holy in our habits and choices. We are just meh. There is no line of distinction between us and the world like there was between Israel of old and the world and like that between the early Christians vs the rest of the world.

Why? Why don’t we do what we know we should do? Why isn’t Christ’s sacrifice worth our dying to self? Why do we act as if the Word is just a bunch of suggestions?

The current chapter my friend and I are on, in the book, is one I hate. The older I get, the more painful Christ’s emotional, mental Gethsemane experience becomes. The harder it is to continue reading the rest of that awful evening and the more heartbreaking it is to know that not only are many ignoring His cry, “If you love me, keep my commandments.” (All of them, not just the ten.) but they are actively teaching others to also ignore Christ’s call to obedience and reverence. I hate that we don’t care about anything that was written in the New Testament, let alone anything written later by our founder that would show the world that we are His.

At the same time, this passage is one I always hold onto. I love it. I mentioned it to my step mom in law recently. If Christ the Creator could want sympathy, how much more do us weak ones not deserve sympathy and love? My point was that to feel abandoned by those we rejoiced and mourned with but who don’t do the same for us, is not wrong. It is normal. It is expected that we’d assume those we loved out loud would be as loud in loving us back.

Their silence is deafening.

The trivial, light conversation when there are deep painful ones is painful too.

So, like many others as we age, I continue to sift out the people who only have a ‘surface only love.‘ I want deep connection and real conversation. I want heart to heart, and two hearts need to be united in order to understand each other fully. And that can only happen when your principles, habits and values are guided by the sane Person.

I am so thankful that I do have someone who sits with me in my moment and doesn’t insert herself in my tears. She knows I sit with her too and so she gives me a chance to get sympathy just as I give her a chance to get sympathy from me.

I need that in this trapped season of hardship and worsening AS and Sjögren’s suffering. I need it as my children’s situations worsen in many aspects or the future becomes more dire, as the light at the end of the tunnel grows dimmer. And so, though I will never understand those who spit in Christ’s face after all He went through for us, I sure understand those who want to give up even more, for I do too.

I have this constant feeling that I owe Him so much MORE! The gift He gave was all of heaven, an eternal peaceful life! What can I give back to Him, stop doing that will thank Him adequately? We wrestle with the questions together, as we read His word, together. I am grateful.

I spoke to a pastor who has been a lawyer for nine years this year. One question he asked was about finances. I told him that I’d wanted to get a real picture of our financial position since last year but the guy has refused to send me bank statements. Totally refused. The most recent time I asked was Friday, and then yesterday morning. All I keep trying is a breakdown in Excel of how much our household is using.

I told the gentleman that when I asked what his medical aid costs each month, seeing as he took the children and I off his one and separated himself from the children and I, the answer was, “Look on the internet.”

He asked, “Did he ever respect you!?? Who answered like that??” I told him that that had ever been how I’m spoken to. In 2023 I started asking if that’s how he also answers his boss and stranger women. He asked me if I want to start a fight.

So yeah, it’s a no. He doesn’t respect me at all. That harlot will see his misogynistic side but she’s a gold digger with him for the money so maybe she sold her soul for it like she sold it for him.

I am tired. I am wide awake at 3am thanks to a non sleeping twin and the back pain, arm pain, hand pain, hip pain, foot pain, pelvic girdle pain and a pain that’s at the base of my SKULL making wearing my headscarf painful, are all also “awake!” I just need to be alone. Yesterday morning I killed myself, straining my body taking care of our children alone while he got his endorphin rush. I have asked him to at least exercise in the evenings on some days so I can exercise in the morning and he take care of the twins when they wake up. Or just so I can rest my body while we wait for the morning AS stiffness and pain to depart.

It hasn’t happened because.. only he should get exercise, clearly. By night time, I’m in too much pain to do it after they all eventually sleep, which I’m only sure of after ten pm.

I might as well be a single parent in my own space. Then there’d be nobody replying in an uncouth manner to me and I wouldn’t be woken by him going to go exercise while I wait for the door that will open and a child come galloping in after the other woke me already in the night.

I’m praying for relief and a miracle. I can’t take this when it’s all piled up like this.

Yesterday, I came to the bedroom to turn the humidifier on for my Sjögren’s dry nose, throat, eyes, mouth, skin and lungs. The dry cough it had been producing is awfully painful. I then also got some information together for an autism dad and tried to lie down and rest while doing that and also editing my Bible story video.

When the children came wanting something, I had to get up and as I drew closer to the kitchen, the smell of burnt pumpkin assaulted my nose. I’d forgotten I was also cooking😩 This happens often. I multitask so I can try get things done, emails sent, lessons planned any time the children are not interrupting me, and Vi has saved many a pot. This one made me sad.

The smell was worse than it looked! She saved the food?? as Shay’s, But what made me sad is how last week when the father was on leave, I had been cooking and then Little Miss I Pull You Everywhere, had taken me up and down. I opened the bedroom door and could smell the burning food?: P Thanks zzzzzzz n sa ya q?. He was right there. But he hadn’t turned it off. And it truly was burnt. So I had to start afresh with the cooking and it hurt. Hurt because there was an adult right there but they didn’t care to help, because it and it hurt physically.

It’s better to suffer alone while alone than to suffer alone when there’s someone who is meant to partner with you in the home.

In the words of Queen ‘mmmm, “I want to break free!”

I’ve always been clear that I didn’t think any of my four children would manage to get and keep a job. Our gifted one has sever PDA. They struggle to keep jobs because they don’t understand what it means to be the employee vs the employer. They want to make the rules and are very bossy. That’s her and Amarissa. What kind of job would allow you to treat your senior like a junior? And to argue with them as if they are arguing in a debate and not an employer telling the subordinate what to do. Also, they hate being told what to do. It raises their anxiety levels.

Then I heard of a real live case. The children’s father’s old boss’s son. The guy is level one autistic and is over 30 years old. The level one that makes many people assume the impact of autism is ‘easier’ to nonexistent on the autistic. He finished his university studies just fine. But he cannot keep a job. His mother bought him a flat because he’s too hard to live with. He’s level one, so he can complete all his self care needs on his own.

What he cannot do is make exceptions, and change who he is for the sake of fitting in. He told interviewers he is about to be honest because his mother told him to just tell the truth. That little disclaimer puts interviewers off already. Don’t ask me why. I think it’s cute!

But where problems really come in, they are not solvable. He joins the company and familiarizes himself with the HR policies and rules. He reads everything! As soon as someone, even if it’s the CEO, deviates from the ‘script,’ he gets very angry. We know autistics need order and predictability. His world made sense after getting to know how the company works, till it doesn’t work like it should. Besides arguing with everyone and firing off emails about their breaching of their code of conduct, he also decides he will not return to a dishonest company that doesn’t practice what it preaches.

How do you fix that!?

Can you fight against his strongly ingrained sense of principle and integrity? I wouldn’t want to unless it’s where he maybe misread or misunderstood. His rants that he verbalises to colleague or boss are what I’d expect from the three children one day. They desire predictability and I can imagine my Naynay taking ages to read the documents and then seeing the opposite and definitely reacting… She wouldn’t manage an anxiety provoking reality that is against stated guidelines. 🤔It sounded funny to hear, but not when imagining his frustration with all the ‘dishonest’ companies and the impact on parents who assumed they’d have an independent adult son one day. They have other children who are fine.

For now, I try manage the expectations my children have of their futures. When one says he will become a doctor when older, I warn them about other autistic adults who can’t be doctors, can’t drive and hate that they rely on their mothers (I love the internet!).. and that either way, no matter what they can it cannot do, we will make a plan for them somehow. (Even if it’s just the social meetings that I’ve seen advertised for youths and adults with autism.)

For now, I deal with my poor girl finding joy in Maths and unable to understand why her siblings cannot do Maths at all. She tells them she’s going to play with them, and pulls her Maths flashcards out🤭! “Ok, Micaiah, what’s 6+4?”

“Eight?” He asks.

Of course not. She doesn’t even need to read the back of the cards to know the answers. Some are 9+6, 8+4.So she got their toy cash register and told him it would help him do Maths.🥰She just cannot understand or internalise it when I tell her they can’t do Maths and will never be able to do it the way she already can. I ended up telling her that they haven’t done 15+16 yet when she asked my poor boy and she was shocked, “They haven’t!?” Except, neither have we in our Maths lessons together😅. It’s all in her own head. Amarissa asks me how she knows all these difficult sums. And she truly wants to know the ‘how.’ I can’t explain properly. I just tell her it’s her strength. By the way, Ammy’s now able to remember that 2+3 is five! We have forward movement.

Hey y’all! I went to the feedback session for my 11 year old daughter. And as psychologist said, “…Just like you knew, she is autistic. She’s at level 2-3.” (Level 1 needs less external support. The people who used to be referred to as high functioning. The ‘lowest level is 3.)

I recorded something on gaslighting so I won’t type much about it suffice to say, the psychiatrist who never observed her, spoke to her for even 1 minute, told me she’s not. And I didn’t believe her.

The rest of the meeting was about the traits she noticed when she observed her for an hour, the DISCO questions and then recommendations. She is if the “less is more”’school of thought, which works well with my nonexisting budget for all the extras. She said at some point we will probably add in psychologist for emotional support. Suggested children’s supervised OT social groups-I’ve looked for that for two years and found none. She only knows of one in a suburb way too far away.

The other formal recognition was the usual. “If mom isn’t well, the children can’t be well” line. I need therapy myself, I need someone to help watch the children while being therapeutic-she suggested training which she said is very expensive, for people to become trained facilitators for children IN the home. Now, each session cost R1752.00 and I had three and a half session billed at full price. And that’s not expensive to her. I shudder to think whatthose costs are.

“You’ve taken too much on yourself.”

Only because if I don’t do it. Nobody else will. Even when I cry out for help and support, nobody in the family steps in like I ask. Simple things like giving our non speaker syringes of her post hospital her meds till they’re all done so I can focus on the other children. Not forgetting there’s the other medication for all of them that I’m also working with. But I’ll get a “No..I forgot” when I ask if it’s been administered.

School work. Therapeutic work. Extra resources. Parenting. Cooking. Sorting laundry. Folding. Putting away. Teaching. Making. Medication…I have “taken on” so much that I forget my own medication, sometimes for days.

But, there is no other choice.

So, we keep pressing on.

I now have five officially diagnosed autistic children. This must be some kind of a record in Cape Town.

Long, long ago, when my 19 and 20 year old children were aged between six and 18 years old, I had no school holidays except for when I was recovering from surgery, or when I was sick, or when the children were sick. It was lovely, because it was the children’s choice.

I should have known they were autistic!

My oldest two told me as teenagers that they couldn’t not do school. The concept of a ‘holiday’ was good, but living it was hell. They needed to do school. They didn’t know what to do. They had the library, they had outings, as they grew older they could go on trips out alone, but nope, school had to happen. Only this morning as I type do I realize that what they were saying was that they missed the routine and needed it.

I changed things around for us to do school through the year, by reducing the daily work load and powering through daily. It wasn’t that bad physically because they were self teaching anyway. My body could handle our school field trips if I rested as soon as we returned, and all was good.

Enter my middle two. Their disorders and challenges make school very difficult for them anyway and so school work isn’t pleasant no matter how easy you make it. They were happy when I told them it was holiday time again. With biggest sister here, I figured they might as well have an official school break for two weeks. The only formal thing they’ve been doing is vision work at home, and attending their occupational and vision therapy sessions. I’ve also focused on fine motor skills and eye hand coordination with the crafts and cutting, gluing and colouring in, hand puppet making tasks I’ve given them daily.

Yeah, it’s not much of a holiday for me. Moderate to severe ADHD children need supervised work to keep them safe. Low registration children like the one above, can’t enjoy living normal life.

But I knew…Our talkative twin isn’t like the middle two.

Today is day four of their holiday and she broke. Meanwhile, when the older one would do vision, I’d bring her in for abbreviated school time. But nope, today she had enough. “When are we doing school? After we go for a drive or now?”

My options. Now or later? There’s no ‘no’ option.

And it had to be when I’ve woken in hell. Sleep was awful. Everything was in pain, eyes and nose and throat drier than ever. Bones sore in places you never think of. I wanted to stay warm in bed. It’s the warmest place for me and Sjögren’s people need warmth else the skin is even more easily damaged, infection can creep into the cracks of the skin, and fingers react badly to cold with swelling and pain. Sounds like AS too, that last part! Also, it’s not like I can humidify the entire house. I need to create moisture as the norm is not enough.

But, I had to get up and get dressed because I’m off to attend my girl’s feedback session after her DISCO questionnaire. I really hope the psychologist doesn’t talk for ages, folk. I really prefer just reading a report than the way they talk down to you. It’s ok for the parents who are new to the journey. But man, I’ve had four diagnosed children. I know what a low percentile means… And I need to come back and teach.😉