They said I should write a book

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.😉

Our girl is back from her PICU stay at hospital but far from ok.

This mommy heart, and my friend’s aunty heart, is very sad for her. Nothing takes your concentration and ‘mojo’ like the suffering of an innocent child.

I can’t even describe how bad the admission was. So bad her OT phoned the Paed’s rooms the next day to ask if they think she can do some kind of training for nurses regarding how to empower autism parents who know their children much better than they ever will. Simple things like when we tell them she will not just sit in a glass cage but will scream and cry and try run away while they make us try hold her back for six hours.🥹

To how they don’t ask how she prefers things done, how to reduce her suffering. So instead, add to it.

Some nurse spoke snootily to me that no, she didn’t try rip her bandages off her hand, she just wanted her thumb. A thumb which they’d already left sticking out and which she wasn’t there to see her NOT trying to get to. The nurse spoke snootily to me when I told her if she doesn’t sleep, she will remove her nasogatsric tube (Goes through the nose down the throat and into the stomach to flush her awful fecal impacting down and out) and told me she can’t sleep all day and she will not do anything as she’s peaceful.

I

Peaceful and peaceful after the ripped the tube out too.

It was days and nights of trauma.

And now she’s home and sad and lying down a lot. She’s not the running around noisy girl. Unless it’s raining like yesterday.

And so, our loving hearts grieve her sadness and suffering and we hope she feels fully better soon.

I can’t even get all six 250ml servings of treatment into her. I couldn’t even get one dose in. She’s miserable and sad and spits it out and it wasn’t even one of the horrible tasting ones. Praying today I can get it in. I use a syringe so it’s slow going. And I have to wait for her to kind of forget so that she doesn’t immediately spit out the next dose which I syringe into her mouth. But I have five other children and myself to care for so the day runs away from me and her medication too.

My heart is sore.

So thankful for my friend whose heart is also so sore for her and wishes she could rescue us. A burden shared is a burden halved. ❤️🙏🏾