Tag: autism

Distraction Time

Grace by any other name1 Comment

I stupidly tried to sleep on my tummy. Bad mistake. My neck doesn’t like being turned. Nightmare woke me as usual as the pain reached a crescendo. Hey, it’s better than when I forgot to take the pillow away. I woke up with my right arm down to fingers paralysed, totally convinced that the arthritis in my neck had now permanently damaged my nerve, imagining having to tell the rheumatologist and get more testing.

I’m tired of the testing.

Then I couldn’t sleep. (It’s currently 3:47am) I, even more stupidly, then read the news. An obese journalist died young. Was she dealing with thyroid problems or other health issues that caused her to be obese? She’s younger than I am… Then again, look at me. I had foolishly (See a theme?) hoped I could stop my anti hypertensives but nope, after a few days of not using them, the Rinvoq induced high blood pressure returned and I had to start them again yesterday. So maybe we are both as unhealthy as each other, thanks to AS. My children’s dad did say so helpfully on Sabbath, “You’re going to die. I’ve been listening to a book about sleep. You’re going to die young. You’ve never slept in all your life.” Yeah, very cheering. Especially as it was after I came across research stating that just three NIGHTS of bad sleep raises heart attack risks.

Change topic.

Oh, but now I can’t breathe well. Why didn’t I use my inhaler last night? I’m just tired. Tired of all the medicines fighting the disease. Tired of the medicines fighting the medicines fighting the disease- including the esomeprazole fighting the anti inflammatory impact on my sick ravaged eaten away stomach lining. Tired of the Rinvoq constipation making IBS worse so now I take Soflax tablets for THAT.

Tired.

Then I saw how many people have been shot in the past week in our city. The innocent children, the baby, the taxi passengers, the gang violence that is so endemic.

Shared a status about how THAT triggered the “It could have been me” feeling I had when I was about 11 or 12 years old. The Mowbray Golden Arrow Bus Station was close to the taxi rank. Depending on how long the taxi line was, whether my taxi was there, how long the bus queue was and what time I’d arrived there in Mowbray after walking from school in Rondebosch, I’d then choose whether to take a minibus taxi, or the bus.

One fateful day, I decided to just take the bus I was tired. It was there as I arrived. I didn’t feel like going further down to see how full the taxi was or how available it was. Then the bus kept stopping to let people off and on. So much slower than the taxi. But then, as we drove towards Gugulethu, passing through Gatesville, one of the taxis I usually took was stopped. Nobody was moving around. Shops quiet. The driver was hanging out the door held by his seatbelt. The middle passenger had been someone’s relative. Now she was a dead lady with a beautiful perm and an ugly bullet hole in her head. Head blown backwards by the force of the bullet so we could all see the entry wound from our high vantage point in the bus.

Silence.

Fear.

Heartache. I imagined that she was a kind loving mom and now her children would be wondering where she was. I will never forget that scene. It is as imprinted on my mind as the fear when at 16 as I walked to my cousin’s funeral, a gangster who’d been shot in the head, a youth holding a gun came out a house in front of me and I had to walk behind him in abject fear that he’d suddenly turn around and shoot me dead.

Ok. The news was not a good idea.

No sleep.

Too much pain

Chest wheezing.

Time to think about something better. Ok, before that, let’s get the inhaler! I did promise Ammy that I was taking care of my lungs. She had a bad night two nights ago because she heard an ambulance in the night and then thought about me dying and couldn’t sleep again. What compounded her fear was her imagining my collapsing, having a heart attack and dying. Somehow, she links that with the most recent SI joint infiltrations (those deep injections they do into your SI joints) that had – by the time I had driven myself home all the way from Durbanville- made my legs numb so I was stumbling and falling and all three little ones had to hold me up to get me to my room and bed. That traumatised her. She was scared I would fall down a section where we have two steps, and die.

Ok, yet another reason not to try those injections again. Plus the mild pain reduction wears out and they ARE bad for the joints they penetrate.

Ok… That’s again not a positive thought! Hey, the inhaler is working now. Less wheezing but chest sore.

Ok… Really time to dig deep and try pretend I’m not in pain. And no loud noises from my spasming intestines. What can we think about?

School!

My crazy five year old!🥰

I came out the bathroom where I’d been convinced I’d heard her father shuffling around, and went to the front to go start her sister’s braidlocks. Yep, I am trying for the very last time, to get their locs re-started now that their hair is more grip-able. I’ve begged them to never cut their locs ever again. I’m tired. Loose hair? My natural (read-EXPENSIVE) hair potions are used up in a day. My cheap ones, mixed with water for some reason! Put their hair in cornrows? Ammy fidgets with her hair and it looks terrible within a few days. Do wool braids? They style and re-style and do such tight styles that there’s way too much pulling and they’re too young for the traction alopecia nonsense. The missing hair line… Injibhaba in isiXhosa. (Don’t ask me how to type that. The only Xhosa reading I did was the Bible and the hymn book. Those don’t talk about missing edges!)

Got out there, and Nalo called me back to the bedroom to show me what she’d been doing while I was in the bathroom.😅Back I went, leg and hip burning. She was so proud of herself. “I did Maths! Come see! I did Squeak and Scratch!” (Two squirrels who needed five acorns each.)

“See!? Look! I sat down and I did three plus two! It’s incredible! It’s so amazing!”😂😂😂😝😝

“And then I did THIS dangerous thing! The chair was shaking when I was holding on and my feet were up! Ooooh!”

She killed me with cuteness. She is in love with maths. (For now!) Like many children, she loves kinestethic methods of learning. But she loves numbers in general.

I wish we could bottle up her joie de vivre! It would give us so much energy and joy! Life is good for her. She eats, she does school, she talks and sings a LOT during school, sometimes singing the words she’s meant to be reading, or singing the numbers she’s counting…

We could all do with such happiness! We need it.❤️

WhatsApp and..Bras?

Grace by any other nameLeave a comment

Warning- I have fellow autoimmune inflammatory arthritis followers so I am very real about what active Ankylosing spondylitis is like for people like me who aren’t responding to treatment. I will include nipples.

She has absolutely NO idea how this long running conversation of many topics has been a help. Because it’s through WhatsApp, I can do other things while still taking a chance to steal a glance and reply. And with the level of pain I’m in, the distraction has been perfect. I’m unable to lie down and rest because of parenting duties, so she’s seeing me through the suffering. If I’m in bed and the pain is this bad, I can’t even try converse because I feel so alone in the war that the other doesn’t realise or can’t imagine. But like this when I have no choice but to keep smiling and guiding and leading… I need the distraction.

It’s mental too. My daughters change their clothes multiple times a day. I had tried to keep their clothes in my wardrobe but I don’t have space. I have quite a few outfits like this- three are thick dresses/robes like this below, and four are onesies. Worn because skirts hurt. And with thick material, you can’t see nipples from a body that can’t wear a painful bra. I mention this because it sometimes comes up in AS groups, women asking if it’s just them who can’t handle clothes and bras. Some don’t wear bras at all. Some stay in their nighties all day… All because of the pain..

That means my own wardrobe space is filled with warm hoodies, normal clothes, and these space stealing style clothes. So I took some out and put them back in their wardrobes. Which then results in this.

I just want to cry. I hate mess. I can’t bend down to pick it up. I got a third of the room done via directing the owner of this shared bedroom and then went to see how much I could get if the other one whose owner was too sleepy and angry to be of much help. See those pink fleece tops by the bed? I reminded my girl to hang clothes, put others in the drawer.

Yeah, that’s not a drawer. It’s all day, every day, it’s draining and frustrating. And I’m tired, readers. I’m so tired of being single mom. Last Sabbath, there was someone constantly coming in so so often that I ended up texting their dad about how Andrew Yates was found guilty of killing her five children by reason of insanity and so avoided the electric chair. I told him that one of the things her defense pointed out was that she “only got two hours a week away from her husband and children.” I pointed out that I get no time away and she was healthy. And I added that I can fully understand the South African doctor who forgave his wife for killing their autistic children when they moved to New Zealand and she was alone with them.

He got the message and told them to sit down and stop bothering me. It should not need to go that far. Surely if people know we are constantly bombarded every day, they should automatically give you a break on a weekend? But anyway, it was a warning that this was unbearable, not that I was about to harm the children. because if anyone would die, it would be me. They deserve life. I’m the one who is stressed and sick. So I don’t understand killing the children. It’s selfish – in MY eyes. I’m the one with the problems, not THEM. Why should I get to enjoy life while little children lose theirs at my hands? Even during the worst of postnatal depression, my wish for someone to randomly come and adopt them, or for them to suddenly be taken into a wonderful baby care facility. Never for them not live. I don’t understand it. But anyway, that’s how it is. Constant drip drip of torture. Yesterday afternoon, my five year old came to the room barely 4 minutes after she’d already come and I’d given them activities to keep them busy, and I exclaimed, “Please, please don’t say anything. Give me one minute. Just one minute, then you can come back.”

She didn’t come back right then. She told her ten year old sister, “Mommy is begging for one minute to rest.” So big sister wisely told her not to come at all because what was the reason she was coming? To ask me to buy them a ballerina dress each. Definitely not something that would exactly make me rejoice! (What they don’t know is that I’d already ordered ballerina dresses and they’re on their way.)

Yesterday I realised that unlike a school teacher, I don’t get break times in the staff room. I’m with the pupils all day every day. I don’t get a drive home like my husband does, who then listens to an audiobook and basically ‘relaxes’ on the way home, leaving the work environment. We live work. There’s no holiday or sick leave.

My shoulder. My thumbs. My leg. My shoulder felt more pain just stirring a child’s bowl of maize porridge. Just doing that. That’s the pain the WhatsApp conversation distracts me from. The back. The hip. The SI joint. The heartache and loneliness.

You can’t feel lonely when you’re alternately laughing and being serious.

So next time your sick friend seems very amenable to chatting, even if there might be long pauses while they feed or medicate or remonstrate or hug a child, please do chat if you can. You have no idea the blessing your conversation might be to them. I crave adult conversation and I’m thankful. Yesterday, as my son ate a clementine, he – who knows full well that we believe God made fruit and fruit trees- asked me how people opened up the peels to glue the wedges together.

That’s the level of conversation I have sometimes. The adult conversation is a blessing. Think about THAT too if you’re chatting to a sick mother who is a shut in. Not all husbands ask about the children. Not all husbands ask about progress with spelling or even know the resources being used to help the children. Some husbands seem to exist only to tell their wives about THEIR work. You sincerely might be the only one who cares and knows and gets frustrated about occupational therapists. A story for another day. If she’s chatting, she might be chatting not only because she loves you, but because she needs you.

❤️

Morning Has Broken

Grace by any other name1 Comment

Autism and ADHD aren’t famous for helping their ‘victims’ sleep well. I have three out of four who don’t go to sleep well, don’t stay asleep, make hectic noise… Some mornings I don’t get to study my Bible because noise woke me and continues. Sometimes there’s boredom and one wakes the other. It’s just constant awareness of ‘something will disturb the night and/or early morning.’

And then when you wake up, you have my chubby five year old and her driving commands. On weekends, her dad takes her on a few of the drives. At first he’d tell me, “Just say no!” when he’d see me reach for my car keys. Now he sees why I don’t. The screaming and crying destroys everyone’s peace. Agreement leads to peace. And added pain for me in my bad leg.

So, we have Violet who comes in too often. The agreement was Monday- Friday and two Sundays till 1pm a month, but she tends to come in on more Sundays than she should! And my nine year old doesn’t help. I cringed one Friday when he said to her, “So we will see you on Sunday??” And she agreed with him! I reprimanded both of them. But, they’d made their agreement!

Some days, I want to cry. Since yesterday, I’ve been in a flare. Bones aching, fatigue back, almost didn’t reach my 10000 steps. Morning has broken and my problematic right hip is not giving me s break despite my 200mg Tramahexal. And that’s on top of the tongue that has two sores on it that are so bad I’ve asked the rheumatologist for help so I can eat.

I agree with the rheumatologist. The stress must be causing fibro issues. But wow, it took three full months for my tongue to obey my brain. It was scary. So I’m never touching Lyrica again. Which means that though I’m already on an antidepressant because it helps with nerve pain too, I wake up with a sinking feeling or am woken up by someone that will cause a sinking feeling that lasts throughout the day.

Why?

“Another day has begun. What will I be putting my body through today? How many times will I reprimand fighting children? How many times will I have to deal with my two PDAers demands and my ten year old’s struggles and my non-speaker’s demands? How do I get out of the multiple drives?”

Violet tries so, so hard. A few times, my girl comes to me saying, “car..car…” and then she is content to play and Violet watches her to ensure she doesn’t hurt herself. Other times she pulls her brother onto a scooter (really meant for younger chosen but her likes to ride on it anyway) and he has to keep riding around. One time, that ‘play’ caused her to speak! I was in there watching them just before I made lunch, and every time he stopped riding, she would pull the scooter. At one point, she shouted, “Good job!”🤣

Sadly, more often than not, she can’t be distracted or doesn’t allow herself to be distracted from her driving urge. And so, if I don’t go, if I try rest, or if I try continue working, it will descend into screams which cause her twin to cover her ears and ALSO scream. And then she and Micaiah complain to me that “she’s making noise!” And if I am in the loo (my bladder etc issues are back and I refused to catheterise myself daily so I have trouble with that aspect- taking ages to relieve myself) she will become so upset that there reaches a point where even when I am now driving, she can’t regulate anymore.

So..I’ll have to do it and have to when she wants. This morning, I’m truly dreading this day. But also, thankful that for a few hours, I’ll have someone in the house who wants to take the burden away.

My children’s photographer when they are at the playground.

Good job indeed. Earned me a few minutes’ rest and time to make their lunch without Little Princess pulling me or pulling plates or dishes out my hand because I’m not going to the “car.”

Special School at Home and the SHOP!!

Grace by any other name2 Comments
By my ten year old (washable, don’t worry. I use washable markers so I can get some hand strength going on when they wipe it off besides the positives of writing on an upright surface anyway)

It’s the little things. The little things that mean so much to us mothers of special kiddies. It’s like when your neurotypical baby takes its first steps or suddenly reaches a milestone they hadn’t yet reached. I used to praise my babies for “sitting without falling!! Good job!” Or “You got off the chair without Mommy helping! Well done!” To which my husband would respond, “Look! I just got up. Why can’t I get praised too?”

You can imagine the withering glance I gave him.

All new moments are worth celebrating. And so, when the same moments took longer for our next ‘set’ of two, it brought slight worry. (Amarissa crawled and walked later than normal and never crawled typically, but her babbling was ok but more importantly, her brother who we adopted nine months after her, was VERY obviously not ok that her small late milestones were ok.) That was a mouthful between those brackets! I was just glad I COULD also celebrate that she was walking.

With our fourth, our second of the second ‘set,’ it was the lack that was glaring. It was the sudden realization that it wasn’t ME who was suddenly unable to bond with him which meant I was a bad mother, but it was his inability to look me in the eye. It was HIS looking anywhere but at me as I held him, bathed him, fed him. It was his leaning away that meant I could not hug him to myself that caused the lack of closeness.

Fast forward to this week. It was his lack of engaging when I read a book, that meant we had no joint mother and son moments at all. The lack of babbling, the lack of turning when I’d call his name but perversely, the screaming cries when I coughed in a different room. The idiot doctor who didn’t listen to me about what we came to confirm was sensory processing disorder and global developmental delay and autism. and coldly told me, “He’s fine. There’s nothing up with him. But if you’re worried about his hearing, you can get him tested.” Despite my telling him how sound caused him to wail.

He was my first autistic to not enjoy being read to. But it’s my last autistics who have forced me to go about reading to them in a totally different way.

Like this below. How gratifying that the same boy who didn’t utter a word more react to a word, has words that he voluntarily speaks today. The one who didn’t react to anything, has “favourite” parts.

Yesterday morning, this one below came to me, “Mommy! Let me ask you a question. I was saying my vowels in bed today. Listen, a, e, i , o, u!” I haven’t had the heart to tell her how often her questions are actually statements. Not in that moment of great excitement about VOWELS, of all things.🥰

This special needs parenting job has hard times. I’ll focus on just one aspect for now. You seriously want to bang your head against the wall every single day, multiple times a day. I have FOUR children with ADHD bad enough to be medicated. But that doesn’t exactly strip them of their wonderful personalities, nor of their tormenting creativity. “Let’s cut this thing that shouldn’t be cut. Let’s paint with proper adult paint wearing our cream dresses that we will splatter with said paint. Let’s use the hair dryer and cause smoke to come out. Let’s use the toaster but instead of leaving it where mom said we should, let’s turn the temperature up to the max so that mom comes out her room wondering why there’s smoke everywhere. Let’s walk around outside on brick and thorns wearing only our pantihose. Let’s catch bees after having been warned multiple times, then stress our mommy when the stinger has to be removed from a finger and it stays swollen and sore for two days. Let’s argue about whose doll should be called what. Let’s tattle about who said what yesterday/five weeks ago or just now.”

It’s relentless mental strain. It’s so tiring keeping calm when you just want to scream. “They can’t be left alone.” They don’t WANT to be left alone sometimes, anyway. Not only once, my talking five year old has knocked on the toilet door then screamed and cried because I was “taking too long” for HER liking.

So, every positive is a huge bonus.

My girl who can’t say what she wants but couldn’t reason much either, is starting to understand at last. Remember how she spent over a year pulling me to do something impossible then attacking me because it was impossible? Those days are over at last. She doesn’t want much that’s impossible. When she wanted to try on her sister’s shoe – smaller than hers- it didn’t fit and she didn’t throw a tantrum, she just threw the shoe gently away. No tantrums. No violence!

And..she’s planning more and seeing how she can get things to work instead of being angry it’s not working out and then attacking me if I’m too slow (for her liking) to help her.

Speaking of “angel.” My ten, nine and five year olds who talk didn’t know why I call them angels when they age human. I tried T explain… Micaiah said this week, “I think I see why you call us angels. You’re trying to say we are nice like angels.”

But of course, there’s more to life than learning from books and play.

There’s also life. And so I leave you with the reason I’m now in bed with terribly aching feet and bones.

She played out in the garage for 31 minutes. No coming in for supper. So I kept sorting out the three that were indoors with their supper and medications, and had to go up and down doing the same for her! Meds, water with a bit of fresh juice (Still can’t get her to swallow water unless I give it in a syringe), meds again, grapes, meds, banana. In and out. I went from 9000 steps to 13458!

This is what she was doing in the garage. This is why I was going in and out. My life is crazy but sometimes it’s a good crazy.

The SHOP

I haven’t taken ALL the small ones to the shop alone. Not without the teens. Never, ever. I’ve gone with my talking three. But today when our minimally talking twin said her infamous, “Car. Kayi” I took them for her required three times a day drive and decided to just take them in to get treats.

I won’t do it again. I forgot that she’s a runner so I’d need to put her in the trolley. She also wanted to walk ‘funny,’ not facing forward but sideways like those crabs you sometimes see on documentaries. It was cute, but stressful because she also wanted to step over certain lines, so into the trolley she went. Which meant I broke the biggest rule my rheumatologist had for me. No LIFTING!!

We got out in one piece but I almost lost her when she tried to go running off as soon as I put her down after lifting taking her out the trolley.

But all’s well that ends well. I didn’t lose any child and they had fun. My BP which Rinvoq has raised properly shot up even more. On that note. I’m worried. The leaflet in the box states that strokes and heart attacks are “frequent” side effects. I emailed the rheumatologist about how my diastolic numbers (and sometimes my systolic rises above my norm but badly) have gone up. I expected the type of response I’ve seen other doctors give to their Rinvoq patients which is to either put them on anti hyper intensives like my nurse cousin wants her to, or to stop the Rinvoq.

My rheumy doesn’t believe it’s the Rinvoq. So instead she’s changed my anti inflammatory. I’d WANT it to be caused by the old anti inflammatory as that would mean I continue seeing if Rinvoq can put me in remission. But I’m not convinced. Especially given I then sent a WhatsApp to the Rinvoq NURSE who said it’s not common but it is definitely m a side effect of the Rinvoq.

So here I am. It’s been over a month of a raised BP. From a normal range of 68-74 diastolic (lower number) to this below and hoping it is the anti inflammatory though not sure. And it’s not like I’m taking my BP every day. Maybe it’s gone higher. She said I should continue monitoring it. It’s just too long , having an elevated BP and doing nothing, especially with the headaches that aren’t the bone pain.

We shall see! In this family, the entire school – teacher included- is special.🫣

I Know what I Want for THIS Mother’s Day(s)

Grace by any other name2 Comments

I want to do more! You know how it is. All the things you want to do and only remember when you’re busy with something else…

Like noticing how untidy the garage is when you’re busy hanging damp washing in it.

As every mother knows. Well, mothers who don’t have live in nannies, that is. As every mother knows, mothering is your calling and job. So when you have four little ones with autism, ADHD, intellectual impairment and nobody else to talk to and plan activities for them, you don’t have time to do those things that irritate you.

Add active AS, and you don’t really have the ability to fix those things that irritate you either.

So what I want is to go into remission. There are people in my Rinvoq (My newest treatment attempt) group who are in remission. That means no pain whatsoever and they’ve almost halted the disease completely. The CEO if the large retailer, Shoprite said in his book that he’s been in remission for 30 years!! And he knows that when the AS starts being active again, he can find other treatments. I can’t imagine having no pain for the next 30 years!! By then I’d be 75! Better now than never, right??

I want to stir food and not be in pain. I want to lift light shopping and not have my husband ask what’s wrong because I forgot he was there and so didn’t hide the grimace the pain in my shoulders put on my face.

So I tried to do one thing I wanted to do.

I put the kiddies to sleep first. The first one to go to bed is this non-speaking angel who threw a very tiny fit because I took her for a drive that was too short. (third drive of the day) I put their soy yoghurt, peanuts and raisins and peeled and separated tangerines on the table and RAN away so she would not pull me. She stopped her half hearted crying! And by the time I came back out to finish off medicating them, she was happy again.

This was sent to me last Friday when I was hiding from having to do the second drive of the day. (See a theme?) She did the arranging of the soft play therapy toys plus her now too small car seat on the treadmill ☺️☺️

I want to enjoy more of that. Her crazy creativity and moments of peace.

I got a lot of ‘crazy’ tonight. She was in her room laughing and laughing on her own! For 25 minutes straight, my girl laughed and laughed! Then she slept.

The next to go to sleep was her twin.

I set up her electric hot water bottle, turned on her walk heater, tucked her in and told her I loved her.

Two to go.

I forgot about their meds. I hope their dad medicated them. I got busy! But I did give my ten year old an activity book to do before lights off. Then I went…

And I’m now lying here putting my hot water bottle on my very sore shoulder and then putting it on my lower back. All because I did something else I’ve been wanting to do.

I went to the garage, knowing I’d already done grocery shopping and breakfast and lunch. And knowing I should therefore REST! But then, the washing was getting damp in the waning afternoon as dew fell on it so I had to drag my sore body out.

And then I saw it.

The thing I always want to sort out but only notice when I’m busy with something else.

The garage

I focused on this area with the box full of damp books. Damaged books. Damaged by the children. And broken toys and some that could be salvaged. I took all the moldy books and papers out to the fire pit outside. Threw away all broken prams, flat balls nobody uses, all of the stuff that irritates. Kept the dirty cups for sand play. Sorted the “stuff” out. Typical and normal night.

It was fun. Earbuds in so I could listen to music without having my son (Who always comes on the drives his sister asks for) asking me what this word means or asking what language I am listening to while I’m trying to sing along.

I want to be able to do this every day, and not suffer afterwards. Not to have to choose between putting my hot water bottle on my shoulder vs on my lower back. I want to be able to work and know that tomorrow, I will NOT be in worse pain.

I want to be able to use the extra energy Rinvoq has given me without fear of what using that energy means to my pain levels.

I want to be much better.

I want to be able to do all the movement activities I plan for the children but don’t get round to because teaching and doing vision exercises are too much as it is.

I want to be a mother in the way I used to be. I want my day as a mother to be as full or as empty as I choose for it to be. I want to stop doing something not because if I do more then I’ll be in worse pain for more days, but just because I feel like I’ve done enough.

For now, I’ll be thankful that I at least had ENERGY to get rid of everything in here and that was in front and around it.

But I want more.

Is that too much to ask?

But also, I want to be thankful that most nights since I started this ‘not so good for my heart’ treatment, I’ve slept better than I have in 40 years. Counting from when the bone pain the GP said was “just growing pain” started keeping me up at night.

I want to acknowledge that somewhere in this horrible world, there is beauty.

WHAT Sabbath?

Grace by any other name1 Comment

I used to dislike hearing people say, “Happy Sabbath” when greeting me at church. I’m not worshipping for happiness, to feel good, but for blessings that will help me become good, holy, pure in God’s eyes. So I’ve always deliberately said, “Blessed Sabbath,” or, “I hope you will have a blessed Sabbath.”

Nothing strips you if the FEELING of being blessed as pain. Emotional, physical, both types. If you aren’t resting from negative experiences, you don’t feel like it is a Sabbath. Sabbath is meant to bring us closer to God and further away from the earth’s charms and harms!

But not when the devil has your health and your children firmly in his grip. You feel as harried as you would on any other day. Yes, you might not be “doing school,” but you’re still teaching. And AS, ADHD, Autism and intellectual impairment and everything else, have no day of rest.

And so, a day which began with some hope has not ended yet *gulp* , but has come with some hard moments. I’ve been warning my ten year old, our helper has warned her, but still, despite us telling her to stop touching and catching bees, she got stung yesterday. And her finger is still sore and swollen and red at the tip. Normal, but it’s the fact that she caused it that makes it worse. I don’t like worrying about my children. It takes away my peace. And knowing it was by choice sadly doesn’t make me STOP worrying or being sad about her (according to Google) few days of suffering.

The teens have been here for almost a week now. I had THOUGHT I’d be able to take the children to nature on Sabbath last week but my body said no. And it’s still saying no. So I told them they could go wherever they’d like and so it was, they went to the aquarium.

After doing some Bible reading, I felt in a hurry. We took a short walk. And that too is a big deal. We used to take walks in the evenings when my husband is around when the children were calm- twins in bed and middle two reading or playing calmly. But now, there are no teens to watch over them in the evenings or on weekends anymore so we’ve been stuck at home. I could walk alone, but I feel like my limp when alone draws too much attention to me and I feel self conscious. And it’s not like it’s a power walk for exercise. Just a short gentle stroll. A third of the distance I could walk two years ago.😐

Back to the point. I was feeling rushed. We just had a few moments of ‘peace’ till the group returned. I came back home and settled in, trying to finish as much of their nature story as I could. But they arrived before I had finished.

And that is the crux of the matter. Two hours isn’t enough to give true rest. Because of their peculiarities, one twin pulling me when I sit with everyone, the other not focusing well when I’m teaching face to face, I have to then record their videos. Edit them, find engaging pictures. And then put it all together. So I’m sitting.

Pain.

They returned from the aquarium. And chaos started. I went to go warm up lunch and dish it out and my girl began, “Car. Car. Kayi. Kayi.” (Don’t know how the vowels change.) Her dad always says we should say no. After all, they’d gone all the way to the CBD to the aquarium, it’s enough. Nope, not for her.

So I went to hide at his urging. But the girl wanted her car ride come hell or night water. And the loud tears began.

Ten minutes later, I gave up. My driving leg has been giving me a lot of trouble. But I couldn’t handle the fact that SHE was unhappy, and everyone (perhaps excluding her father who was saying no to the car ride) else also had to be party to it. I needed to make things better for the other children.

So I took her for her drive.

Calm restored.

But not my own.

For just an hour after that, I found a mess that didn’t make sense at first. Till they told me they’d been melting crayons with hot water. I know ADHDers are creative. But at this point, I wish all their creativity was in a positive direction. Not something resulting in MORE work like their little sister’s brand of autism results in. How will I even begin to clean this?

And this is the crux of the problem. My body doesn’t allow me to be watching over them wherever they go. And I have to parent and teach, feed and launder. I can’t follow them outside to ensure they don’t get stung by bees. I can’t drive all the time. What happens when my joint on that burning bad right leg is fully fused? Or I’ve caught an infection I don’t want them to catch so don’t want to sit in a car with them? What happens when I’m in an even worse AS state and can’t drive her anywhere? How will she and all of us handle her screams and cries? I can’t be hovering over them to make sure they don’t melt crayons. I can’t do it all.

And because I can’t do it all, lots happens that definitely does not feel like a blessing. That short break I got when they went to the aquarium didn’t feel like one at all. Because I was still giving my body to my children. Not by choice, but because their special needs demand I record so they can learn.

I feel like the strain is aging me.

Today is definitely not FEELING happy nor blessed. It’s stressful, PAINFUL and sad. My pain levels are increasing. Even at night I dreamt I had fused up and was planning surgery to break the bones and fuse them in a better position.

Nevertheless, I keep on. What else can I do?

Stolen Money

Grace by any other name1 Comment

I am desperately trying to find educational, or more importantly, therapeutic centres for my children. Places where they can wear what they need – instead of being bound to a uniform of specific lengths and material.

I am desperately trying to figure out how in the world next year will look. Paying for two university students is no joke. We have no clue how that will work. Paying their mortgage for the townhouse we bought them in a secure complex- how will that work out from our budget?

Oh. No. Let’s go back.

We haven’t bought an apartment. We tried to buy scammers stole our deposit!

The ‘estate agent’ sent through the correct offer to purchase documents showing that the seller had signed after we signed. And sent bank details for the documents.

Only the next day when she asked whether the deposit had indeed been paid did my husband notice – when she again sent proof that she had sent the bank details so didn’t understand why we hadn’t paid-that her email address was not correct anymore and neither were ours. The thieves had swopped a letter here and there so it looked ok at face value. But it wasn’t ok. The money had gone into their account.

This was last week Thursday night and we are still waiting to find out if we can get our money back. He went to sign an affidavit with the police. Then got a case number and the agents have done their portion and have spoken to officers on their end. And now, we wait. The bank knows.

So let’s PRETEND the purchase has happened. How will we pay their mortgage, our mortgage, their pocket money, grocery, laundry soap, crockery, cutlery, etc etc , internet, university fees, car repayment, car insurance (We’d hoped they’d each have a car but they’ll have to share) and all my medical costs, the kids’ medical costs, anything that comes out of the blue and our own fuel as well as the teens’ fuel costs and all other costs?

And that is why I am stuck.

I can’t afford to hire a proper au pair. Those people charge an arm and a leg. Might as well be sending two children to an expensive learning centre- something we already can’t do now, even before the teens’ leave. I can’t pay rent for someone to live close by and also give them a salary to be my assistant teacher, to be my children’s supervisor and watcher and nappy changer and bather. And I can’t build a granny flat in the yard because that too is too expensive. We would have little to eat, and nothing left for my medical needs.

I am stuck.

So, so stuck.

The only thing I can do is cry out to God. I’m in abdominal discomfort from the colonoscopy and gastroscopy. And I’m tired. So, so tired. The screaming, the pushing, the pulling, the soiled toilet seats soiled by an almost ten year old girl, the screaming, the nagging, the sentences I must reply to even though I know they won’t even make any sense so I won’t be able to answer them anyway. The constant busy-ness, the planning, the recording, the sitting, the pain from sitting and recording, the editing, the lack of time to get everything done in 24 hours and still sleep. The pain, the limping, the heartache at each child’s specific problems, the wondering, the anxiety, not knowing what to aim for, planning for more assessments, appointments, traveling, fuel, knee pain, hip pain, fatigue just from folding a t-shirt, arms too tired to fold more. The ironing, the picking up bowls, more bowls, cups, cups inside, cups outside, the laundry, more laundry, bowls in the garage, bowls on the grass, spoons in the drain, toys on the trampoline, socks missing partners amongst the flowers, sharp knives mysteriously found outside, crying, bowls on beds, split raisins, spiky milk, hidden old food, money food hidden in my car, pulling, too much eating, worrying that our non speaker will die from obesity related illnesses, fear that she will kill me one day, hating that I can’t take all the children out because she spoils their joy, hating that I can’t take any children out anyway because of my body.

Toilet. Can’t use the toilet in peace. Teen son comes to ask. Talking twin daughter bangs and screams. Shouts and cries. Non-talker screams and cries and if I dare forget to lock and I’m in there to use the loo and make a call in the relative quiet of the bathroom, she comes in, pulling me, pushing me, then giving up and sitting (very heavily) on me..on the loo. Open the door, children waiting and waiting for me. No peace. Night means research, planning, preparing, editing, recording no, reading aloud, searching for extra to add…

Hoping..hoping the children get back safely from their nature trip. Sad. Unseen. I have nobody here to speak to, cry with, plan with, seek help with, hug me, comfort me, pray for me, wish things were better with. I have to be strong. I’m the only mother, the only parent they have most of the time.

I speak out my fear of the future to an adult in the house . “They won’t be like that.” I get told And I think, “ They are already like that now! But I’m the only one who lives it day after day after morning after afternoon after evening. Can anybody hear me!??”

I am sad.

But I am never going to be broken.

The same woman who sent this message below when I cried out into the ether, is one who too will never allow herself to be broken by any human out there.

I may never get any rest while living on this earth. But I know who will be extremely happy that heaven has come at last and I can finally have the rest I never received on earth. One who will rejoice with me and for me. One who feels for me with all her heart and soul.

I am sad. But I am not sad alone.

I am thankful for technology. And I know that unlike many who make empty promises, this message writer would deliver, because even without making any promise, she just gave. Freely, willingly, of the VERY little she and her precious family had.

I’ve had people not only love me, hear me, but also care for me, sacrifice for me. Cook for me, walk at nine o’clock night to go find something, anything that would stop the violent post-op vomiting that wasn’t stopping.

I used to ask God why He let me give so much- time, energy, prayer, thought, care, worry, money, my own clothes off my own back, food, blankets- yet never receive the same love. What was wrong with me that people could use but never love?

Nothing.

He was just waiting for a time when I would need it the most, for a time I’d appreciate it the most, when words would be just as heartfelt as actions. That time is now. I am on my knees. But I’m not alone.

We Did It!

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All of us did it! Every sister who asked almost every single day how the day went, if there was any improvement in the children’s challenging behaviour, if I was able to sleep (No), if the twins slept (We’ve double diapered Reo and she’s been quiet. And so, her sister has also stayed asleep.) Plus she’s on meds that help with sleep. Oh yes, that.

Let’s get to that first. Last Monday, I took Twin A, Naynay aka Neilo aka Oreneile for an assessment. I’d filled in the Connor’s questionnaire as her teacher and my husband did the “parent” one. I also did the M-Chat assessment. I added all the observations of autistic behaviour I’ve made over the years, and emphasised the current challenges- I can’t teach because she interrupts me, she thinks she’s also the teacher and takes over, her violence that comes extremely unexpectedly when nobody is even doing anything that should cause harm or she has not asked for anything we have denied… Her irregular speech errors, “What are you going?” instead of, “ Where are you going?” And, “Where you went?” And, “What are you doing a?” Or, “What are you doing the?”

The extreme hyperactivity and inability to focus. Insisting on doing formal school work (We believe in delayed academics), but saying the work is boring and moving pages ahead, or doing her own thing like writing letters on a page teaching her letter recognition when nobody told her to. Her taking over and teaching ME… And her interrupting her siblings as they learn.

I mentioned the excessive role playing. She don’t play pretend, she becomes a character she has learnt about and is that person in her head. “I don’t want to wear a top. Pharaoh doesn’t wear one!”

That day, she decided she was an elephant. I didn’t even try talk her out of it. It was (is) part of her constellation of symptoms, after all! And after her head was messed, weight taken (She hasn’t ever seen him. She doesn’t get doctor sick, she goes big/breaking her elbow jumping on her bed and then her arm the following test jumping on a trampoline and falling off both times.) She has horribly changing moods-laying out and hurting others for no discernible reason after having just laughed with them. Very sudden and distressing.

I also mentioned her prodigious memory. She had the memory of an elephant!! Can be so caring. She kisses my back and prays for me. She tells me to rest. She tells me to lock my bedroom door so her more violent sister doesn’t come pull me everywhere and anywhere, stacking me when I can’t give her what she wants.

After an hour observation, talking to her, talking to me, witnessing her busy-ness and sudden requests to wash her very clean hands, everything showed that she indeed she has autism, ADHD, extreme pathological avoidance. I was shaken by the word ‘extreme.’ I guess in so used to everything being too much that I didn’t realise it really was too much! Every single child is on the extreme when it comes to behavioral challenges that leave me so tired and alone that I b never paused to think, “Why is out PDA so much worse than it could be?” It’s more the older two who exasperate me because I know things could be better, they would be helpful if they were neurotypical and their actual age developmentally. Why suck ink and spread it everywhere on the floor, on your vest… Why throw clothes out the window and make awful messes every single hour?? Why resist so much? Why the screaming? Why does their sister pull only me so much and.. and why can’t I ever REST???”

We’ve begun on a very small dose of ADHD meds and mood stabilizer which also happens to boost sleep. Both girls are on melatonin, SleepVance but we were still struggling. Waking up for HOURS and being loud about it.😆 She’s also on allergy meds as us her minimal talking twin and minimal talker is on another med that send to help with sleep as well. We shall see how to shift things around. So far, no positive change in her behavior.

Back to us! We did it! Yesterday was injection day again. My regular commenter who once sent money even keeps track of the days as the injection day draws in. I’m the one sticking the needle in, but they are the ones who show care and concern every single day. The one who listens to my cries when in do open up. We did it! Four straight months-NO STOPPING!!! )With Enbrel I never even reached two months!

I don’t know yet if it’s starting to work. This just could be the end of a flare and it will become extremely bad again. The fatigue (extreme exhaustion and wanting to lie down began again yesterday after a few days of my having to remind myself to calm down because doing too much would trigger n more pain the next day.) But.. I had a better week where I didn’t beg to die and pain meds actually did reduce the pain a bit. But since yesterday morning, that has changed. Still not bad enough to wish to die though, so I’m pretty chuffed for now. Praying I get better. We got to a whole four months! Thank God for that privilege! I hope this is the treatment that shows this all down and helps my lungs and kidneys too.🙏🏾❤️

Prompted by a comment

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How are things going with my not very predictable, and very physical daughter? This post was prompted by a father of an autistic child who commented under the post in which I spoke snot my daughter hitting me and hurting me.

Sometimes good, sometimes bad. She has no real texture she prefers anymore. She will eat porridge-y Pronutro just fine, and oats. And sometimes..not. Today was one of those “Not oats” days. She came into the house, saw the oats on their table and came storming to the kitchen yelling angrily. I knew what that meant. This time poor Micaiah who happened to come into the kitchen got caught in the crossfire for the first time (in my presence. ) I didn’t know how he’d react when I was telling her to be kind so didn’t even have a chance to warn him to rather stay away instead of getting close. But, it ended ok. Well, it ended ok for him. He left and then when I replaced the oats with original flavour Pronutro-which she keeps gesturing for-she knocked the bowl out my hand and cereal went flying.

I’m sorry the camera glitches so you can’t see it all.

This is what life is like here. Not ALL days, but MANY days. I will need someone to be nanny who understands the unpredictability but will remain calm under fire. I think of a baby who was hired by a lady in a South African homeschool group. She took a month holiday and went home and they had a sub. She wrote to tell the mom that she misses her autistic son who is so loving despite how often he hits her. I’ll need someone like that unless I miraculously find a very affordable therapeutic centre for her. If we lived somewhere like in the States, I’d definitely have an aide for her and send her to one of their special schools. But, I’m here, not there. And we have nothing here. The government only even starts putting our children on their two year plus special school waiting list after your child turns seven! AFTER. And the waiting list is long! Can even be longer than two years. It’s BAD. I really don’t know what to do and am constantly stressed to the max. I’m struggling.

Then we come to the middle two. I’m meant to brush their teeth. And I’m starting to struggle there too. Just folding laundry has been tiring and difficult. My arms have been giving up on me and feeling strain. This week, it’s gotten even worse. I can’t even fold ONE SHEET! I have to put it down half way through the process. One sheet! I was telling my husband that I wish he could feel what I’m feeling. I wish everyone who expects too much of me could feel what I’m feeling too.

I really DO need to stop working.

It became evident that what I’ve been wanting to do is truly necessary (finding them educational and therapeutic external centers) when I couldn’t even brush one child’s teeth without stopping in pain. One set of teeth! But my arms got tired and were extremely sore. Just brushing my son’s teeth so I had to stop and rest a while. What kind of a life is that? Thats the fatigue we mean. It stops us moving. It makes us wonder if we won’t collapse. It is overwhelming.

I need a second mother for my children. A kind, honest, gentle, able to drive, patient, mother to teach. I don’t think they make others like me. I haven’t even met anyone who doesn’t lose their temper at their own children or relatives. How much more when dealing with mine?

Clothes and shoes constantly left outside overnight to get rained on, or for heavy dew to fall on. Socks getting lost by my mine year old daughter. Underwear thrown out the window by one of the middle two. Daughter still making holes in her clothes. Eight year old throwing food down the toilet. Both extremely easily distracted. I’ll tell my son to go wash his face and he will stop to ask me why babies use pacifiers instead of doing so. Then he will forget I ever told him to go. Or my daughter will go get undressed but you’ll find her sitting down with only one sleeve off, reading a book.

I need someone like Job.

I need them NOW. So yes, it’s been up and down. I’ve managed to divert some anger and get my unpredictable girl her to be less violent. I’ve verbalised her feelings but told her straight after that we are kind and gentle and hug each other, we don’t push. Sometimes she hears and then squeezes me for a hug. Sometimes not.

Homeschooling while terrible unwell is another level of torture. I can’t even finish the next day’s lesson and therapy planning as I’m so in pain by 20:30. Hoping for a breakthrough. And a break.

In the meantime, I grasp and clutch to myself every comedic moment and every insane second. Like my four year daughter who only partially listens when I’m teaching -doing what I tell her, but also planning her own thing. Above, she decided on her own that while I’m reading to her, she’d suddenly draw two C’s. And she did. I’ve never had a student like her before. She marches to the beat of her own drum in every single area of her life. It’s funny. It’s tiring. It’s frustrating when her drum beat is out of sync with the symphony I’m trying to conduct. When she wants to do something totally out of line with what she’s meant to do. And she does most of it, with a smile and easy confidence that her wish is not disobedient nor distracting.. and never negative. So what if she can’t say without stopping to want a very specific book we can’t find and she won’t eat until we find it and put it next to her? So what if she sometimes even coughs and splutters a because she’s chewing and singing at the same time so some food goes down the wrong pipe? She will be warned by me. But she continues and then with watery eyes say, “Oh, I’m choking!” 😩🫣Her not very talkative sister does the same too. She will jump and spin with food in her mouth and sometimes cough and splutter when the food goes down the wrong pipe. I don’t know which is worse! Their extreme activity instead of eating- wondering up and down and going around to find toys and books. Or the middle two and how they will take an hour and still not finish a small bowl of food. And it’s not because of the ADHD meds that reduce appetite. They do that even without the meds. To feed them less would be to under feed them. But to make them sit for three hours would mean I don’t get time to teach. So I end up telling them stop and learn then eat again after a short school lesson.

Told you I need a breakthrough.. and a break. The mind can only take so much constant stress before it breaks. And that’s a mind in a healthy body. Even healthy parents of even one neurodivergent child can’t cope if the child is challenging. And I understand it. I need a break. We all need respite. We all need hope and help.

Rheumy Tomorrow. Museum the Other Day

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Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.

Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.

I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if

Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.

But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!

I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!

We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!

You can find the video I posted with more (poor quality photos) HERE.

Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”

This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.

Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?