Author: Grace by any other name

Why!?

I was still thinking of shutting this down! It’s not like I don’t know my regular commenter personally, so I can just ‘blog’ directly to her!

Now I have to say something! But I don’t know why you’re following me. One American girl was here because she’s homeschooling and she was interested in knowing how others do it. But I rarely blog about it. Not that there isn’t much to say. So I might as well say it now!

Our tutor is not tutoring well at all. Lack of good English, and just general what I thought was common sense, mean that I’m not comfortable with him teaching my son. But I literally physically cannot do it all myself. And schools..? You might know that story. I did find an ‘autism school’ in our neighborhood except they don’t have a playground. And it’s two office rooms on the first floor, not ground floor, of a small office park! They have small fake grass in a classroom with desks. It’s all cramped up and not suitable for little children. I mentioned the playground thing and the owner thought I’d be satisfied with them taking the children to a public park three times a week. No way! My son can’t handle children, smells, noise…Imagine him stuck inside a small classroom with everyone doing different things! Not ADHD friendly. Not even neurotypical friendly!

It was one we could -at a push-have afforded. It’s one that accepts non potty trained children. But they don’t want you to send the child’s facilitator with the child. No way I’m trusting my best scared of strangers non verbal angel with .. strangers who don’t even want to get to know her, understand her signals. Not that she should ever lose her facilitator anyway. But if they’d agreed to have him there until she’s settled fully, I’d have taken them seriously as people caring about the children. But really, it’s just to make money. The school work is printed pages, one at a time. Nobody and a workbook, school book…It’s a babysitting service at a high price with poor service.

I am so sorry it’s a blurred picture. But I was sneaking it on our empty road, with rain, as I was pulling in. I wanted to show you so you believe me. Not that I lie, but I know other bloggers who do, so I like to have evidence.

The child in yellow boots is our mostly non verbal baby girl. And the one holding the umbrella is our facilitator. During the week, I asked the children’s father if he could watch the children while I’m at the dentist fixing a tooth crumbled by Sjögren’s disease. He said no, he will be at church all day. My friend had sniffles and a weird chest so we weren’t sure she wasn’t infectious still from her lingering cold.

Now here’s the thing. We’d had an eventful week. We had reduced the antipsychotic my 11 year old is on, even more, to try reduce her appetite and it didn’t go well at all! She got angry over a minor thing and banged her head on the wall hard and for a prolonged time. The siblings -who can reason- got scared and anxious so I told the tutor to take them for a drive. She was crying loudly and it was just too traumatic for them. Remember, both have sound sensitivity. Now add distressing sound and you have very stressed children.

Before he left, the tutor asked if I was sure I’d be ok.

I looked at him and said, “I hope so!” I was scared. I’ve never been scared of her. I didn’t know what she’d do. She was acting demented. Or demon possessed. Or both.

Then she did THIS. And I was petrified. Those few steps were filled with many prayers. She’s never taken a knife in that manner before either. It’s scary how necessary these meds are!! I told her she needed some tea and to put sugar in. They usually have honey and the sugar is for our helper, but I felt like sugar would be better. When she’d been banging her head, I had not been able to get through to her. It’s like she was in a fugue state or dream. But this time, she responded.

And she went to go sit down. And she calmed down enough to even ask me why she reacted so extremely.

It was after I sent her father videos of both. To which he dismissively replied that she’s just copying something from somewhere. Yeah, and then if she dies? It’s still pathological! After these incidents, knowing my eldest wouldn’t manage all four with their differing wants, alone while I’m at the dentist, is when I asked their sperm donor and adopter, if he would come and watch the children and keep them safe.

And that’s when he said no, he’d be at church all day.

And that didn’t change even after Friday when she cut her hands and smeared the blood around, sucking it and spreading it by blowing on it with a straw. So shocking that even he said I just get her committed.

And so that is why our tutor offered to come spend some time on a Saturday, to keep my children safe.

My poor girl is growing still. NOT good. How long will her body fight before moving from its current pre diabetic state to diabetic? I noticed she was still getting puffier so I asked if we could weigh her. Within two weeks she’s gone from 67kg to 70.5kg (71 a day ago). She wakes at midnight, or 1am, she once made so much noise rustling around in the fridge at 3am that it woke me.

This is last night’s snack. As the doctor said, “Imagine how bad things would be if she was eating UNHEALTHY food!”

Next week, I’ll be emailing both doctors. Just so they know we sure aren’t MAINTAINING weight but also she’s getting taller too and growing which obviously makes you gain weight. But how much is NORMAL!?

This is worrying. I’ve seen diabetes. All those body positivity people should show us their blood test results and fitness reports.

My girl has stretch marks where I never knew they can grow. Serrated dark marks on her arm, around it as if wearing a thick black bracelet on her upper arm. I used to see little children who were extremely obese and used to wonder what disease they had.

I don’t know what my girl has. Surely half an Abilify of the smallest dose shouldn’t be this bad with causing hunger!? Can it be?

I chose to marry. I chose to marry a broken person who pretended he was allowing God to mould him into His character. I did that willingly, naively. I assumed people meant what they said. Especially in the church and on the pulpit! Little did I know that the Pharisees weren’t only in the New Testament. What did Jesus say about them? He told the crowd to do what they say and not what they do, because they don’t obey God.

My children didn’t choose their parents, contrary to what an in law believes. (I really need to stop talking to people as if they have sense when they’ve already shown they’re in cloud cuckoo land! I mean, this is the same in law who once said said her spiritual guide spoke to Zelensky and averted the war. Did the guide die? Given there’s been war now for a while?) I made the mistaken of telling her how I regret the father I created a family with because the children had no choice. She claims they were conscious souls who were able to reason and then became babies for the sake of it. No conscious soul would choose abusive parents.

I feel guilty. On Monday, it was a public holiday. As our ten year spotted his father, he said in a disappointed tone, “I forgot it’s holiday so dad’s still here.”

Ouch.

This evening, Amarissa told her little sister that their father won’t have moved out on Sabbath. My little girl’s shoulders slumped, “Oh man…” My heart broke all over again. I asked why she’s sad he won’t be gone yet. She said he’s too cruel and mean and rude. 💔😭 She put on a stern voice, pointed her finger and copied his cold, “Neilo, come on. Hurry up.”

What soul would choose to be fathered by someone so disappointing and depressing?

I told the children their father will be away this night as he’s off to the city his floozy is in. The reply was swift from my dear 11 year old girl, “Good!” Made her eldest brother laugh!

I made this mess for my children. All I can do is try undo it as best I can. And pray God protects the children during visitation.

I exercised DURING THE DAY TODAY! Usually, I have to wait till my girl is asleep, which can be midnight or ten pm like last night. I can’t relax and exercise when I know she might come in and pull me, so I have to be sure she’s dead asleep. And by then, AS pain is at its worst. So to do my shoulders and back during the day, uninterrupted, was amazing for me! The children went for a super long drive that allowed me to record their nature lesson and exercise! Woohoo!

It’s the little things.

Another little thing is my new laminator! My other one served me faithfully for 14 years. And it had been cheap! R329.00. But, it was getting tired, crumpling up my work. So I had to put it out to pasture and replace it. I upgraded. This one has a blade for me to cut with! So much faster!

Every little thing that makes my teaching life easier, is a privilege.

I’m in pain. From feet to shoulders. It’s been a bad day today. I also think changing diapers wasn’t a good thing to do! I couldn’t even study in the morning because of the pain. And no matter how many tablets I took, it didn’t make a dent in the pain throughout the day. Do you know how long it had been since I had foot pain!? Ugh! It’s like someone drilled into my heels and is hammering the drill bit into my bones.

In the meantime, I’ll be thankful for one last little thing. The excitement my six year old feels when it’s Computing class. She can go on and on! I know it’s because she enjoys entering code into a robot and watching it follow her commands more than just the learning, but it’s cool! She never gets tired of programming that little thing.

Also, her excitement when she finds something that alludes to God. It’s like I’ve not been telling her for three years now that we’re using Christian curricula! “It’s talking about God! Does that means it’s Christian!??”’with a big smile on her little face. I don’t know why, but it’s refusing to upload my little video. The conversations are so random. Today, I found out she thought Jesus was God’s friend. Now, bear in mind, I’ve explained God to them. And I’ve told them Jesus is God the Son. But the brain is mushy so the information hasn’t stuck.

I love how I told her it’s like her and me. I asked if we are friends and she said yes.🫣😅And then I told her she’s my child. So Jesus is like God’s child and they are one family that loves each other. Sorry if that isn’t how you’d put it. I have a neurodivergent angel whose memory retention skills are poor. Just run with it!

The means to afford everything I need for the children’s education? A big thing I’m thankful for.🙏🏾

And one last thing? My girl interrupted my first meal of the day 19:05 because she wanted the lamp. She wants it on but it can only be on when plugged in. She wants to walk around with it. I hate autism and intellectual disability. Will she ever stop wanting the impossible and insisting on it? Will she ever be able to understand and reason when we explain why what she wants can’t be done?

I don’t know.

And that’s a big thing because it disturbs school time, rest time or meal time and she herself is unhappy.

Just a small glimpse of this morning’s autism moments. It started in the morning. Now, let’s go back. I’m on steroids, must use my inhaler four times a day till I’m healed, instead of the normal four, pain meds, antibiotics and glycerin to coat my mouth sores. And I am not being very compliant. Not by choice.

In the morning, this strong one refused for her biggest brother to dress her. She came and got into my bed soaking wet with urine. At first, she wouldn’t even let me change her. I hadn’t taken my pain meds for the AS that is now running free through my body while we wait for me to recover so I can use it. Oh yes, the tongue!? It’s high inflammation in my mouth. Yuck.

So I’m moving and hiding pain. Bending is bad under normal circumstances, and diaper changing should not be performed by me at all. But what else could I do? I broke my lungs and bones even more after she eventually allowed me to change and dress her. She’s still got a blocked nose so that’s not been helping her feel ok. I couldn’t even finish dressing her. I ran out of breath before I could do her upper half, so I let her stay in bed and covered her up and turned the heater on while I contemplated my misery.

I ate breakfast at around 12:30. I took my prednisone after that. Of course I’m wide awake at midnight! It was too late!😫But more importantly, being mother and teacher means you forget yourself. Yesterday, I only used my asthma pump once. The night was sleepless with wheezing and coughing and breathlessness.

My poor friend had a panic attack when she didn’t hear from me yet her messages were open on my side so they seemed to be read but not replied to. It made her worry big time. 🥹I was having a panic attack of my own. A stress attack! I was so helpless and sad! While unbeknownst to me, she’s reaching out to me, I was crying out and wishing I could Philip (when he appeared and disappeared from the eunuch) her from her job and make her appear here to help me. My girl just wouldn’t let me lie down and help me try ignore the AS pain! She was out of sorts and so was looking for nothing in particular. Pulling me here and there but not knowing what she wanted. I tried to break free as the pain was bad and I was so tired. Just a few minutes before that, my leg had given way in the kitchen and Micaiah had offered to be my human walking frame. I was in agony. Lungs, bones, bad sleep thanks to a very loud ship horn that had been going at around midnight for four hours since Saturday night. And just malaise from being sick.

Plus a large dose of penicillin induced diarrhea.😫

I was (am) unwell but couldn’t get a rest. Demoralised. The only centre that takes kiddies with her intellectual level isn’t for autistic children. I have nowhere, no options. The sense of helplessness and sadness was so overwhelming that I threw a box into the wardrobe and screamed in frustration, bringing my poor boy running to ask what’s wrong.

I don’t lose it like that. I can’t cope. I cannot cope. I didn’t use my asthma pump four times today and it’s almost midnight.

If I lived alone, or if there was a special school for non potty trained autistics she could attend, I might have had four doses today. I’ll try tomorrow. My life depends on it. As do the very children who cause me to scream, depend on ME too.

I truly believe my friend sensed my internal screams wishing she was here to save me. Help. Please help, Lord. I cannot do this. Find me a centre. A good one. I’m even willing to send our aide with her. We just need to find one. Pray I do.🙏🏾😭

The one positive? Remember how I mentioned that people of both genders took care of women who were disabled and in adult diapers, caring for them with their sanitary towels and all? Our facilitator aide is a daddy of two girls. In the late afternoon, he helped change my girl for me. Boy was I thankful. I have help while we wait for someone to replace Vi. The pickings have been slim. That’s a story for another post!

I just hadn’t put the two together, so I wouldn’t have reported them together if I’d gone sooner. Amarissa was wondering why, unlike them, my flu symptoms are worse, and why my painful throat is not easing at all. It began Sunday and just never stopped. Talking, swallowing hurt. At night, the pain wakes me. But I put it down to the severe cough.

But there’s my tongue. I felt pain. I figured I had sores and tried to treat them. Rinvoq has done such a stellar job getting rid of my rogue immune system that now I finally got sick, I’m paying the price. Also, I am also nursing the children. So the thick furry feeling along with the pain that increases when I try eat, and when I have to talk (Do you know how much talking five children require!??) didn’t even register. I just knew I needed to get ahead of the wheezing and crackling chest that’s joining the fray so I made an appointment with a GP for tomorrow morning.

Till tonight.

I looked in the mirror and saw white taking over much of my tongue except for two small patches of normalcy that look as if my tongue was SCRAPED away there (according to my eldest) because of how full of inflammation the rest of my tongue is.

And my friend’s question, “What took you so long to go to the doctor?” was now more than right. Google says if you have chest pain – I do, if you have trouble breathing – I do, if you have thrush and the flu -I do, if your throat is sore and you have thrush-I do, get urgent care.

I won’t.

Is my throat sore from a whole lot of inflammation as seen on the tongue? Or from the virus? Or is it now have a bacterial infection and I need antibiotics?

How long will it take to heal? Is there anything at all they can give me to reduce the throat pain? OTC lozenges and sprays make no difference at all. The lozenges just hurt my sore tongue.

Did you know Sjögren’s increases your risk of oral thrush? I didn’t till now. Is it thrush? What is it?

All I know is that I have one friend unimpressed that I didn’t see the doctor faster..

Please let me find quick treatments tomorrow. I need more sleep if my twins will allow me. I loved how Twin A said she’s sure I slept well because she didn’t come wake me last night.

What she doesn’t know is that I’ve been awake since 2:30am anyway, thanks to her TWIN and then my painful throat! But it’s cute that she realises her wakefulness and coming to seek me have an impact on me and notices or assumes I got more rest when she’s had more rest. Very sweet.

Thank you, my two sisters, for worrying even when you don’t see me daily. You and Amarissa make me feel cared about. I have an adult man who comes in and out my bedroom, who is an emergency contact, but has no idea how sick I am because he couldn’t care less. If I keeled over and died, he’d not even be able to tell the pathologists that each cough hammers my head with terrible pain and I can’t swallow and the saliva is thick and choking me, my entire mouth feels like it’s been cut and each bite feels like salt digging into wounds in my tongue and gums so I’m not finishing my food and and and…

I nagged eldest and he will go in a few hours after me.

Shabbat shalom. Continued good health to those who have it.