I suddenly have new subscribers here and there even though I haven’t blogged in ages and the notifications are making me feel guilty about disappearing!😅
So…Update… NOTHING HAS CHANGED!🤦🏾♀️
I’ve failed Cosentyx. My inflammatory markers are still too high, my rheumy still feels swollen joints, fingers etc. I’m still stiff when she asks me to move my neck. So now after giving the Cosnetix nine months, she’s given up. I was so scared that maybe I shouldn’t be grateful that I wasn’t in “I want to be dead” pain, that maybe my hopes for what treatment can do were too high and I should just be glad I don’t wish to be gone. But she assured me that her own clinical examination told her I wasn’t really undergoing ‘treatment‘ with Cosentyx.
I saw her March 3. It’s now April 5. And again, time has gone with no medication in sight. I will have a R1700 or so co-payment to make for the portion medical aid isn’t covering, but despite their approving ONLY FOUR MONTHS FOR NOW treatment with Rinvoq (daily tablets), nothing has happened. In desperation I texted the zrinvoq nurse on Thursday night when I couldn’t sleep, asking her to just get me the medication even though we don’t know if I’ll get funding for the copayment. She said she had sent the prescription to the pharmacy and they’d send me an invoice. It hasn’t come!!
Needless to say, I’m not happy.
And I’m back on an inhaler. I told you, NOTHING has changed!
The children too have not changed. Which means I am always anxious about what will go wrong each morning. What will make which child throw a huge tantrum. What will suddenly set our talking twin off and make her violent… Like punching her big sister in the eye because her big sister dared to hug her twin. 😔 Or I wonder when her larger twin will start attacking us… Or when she will walk into my room and start wanting impossible things. (Like removing the camera part of a Tablet.)
It’s such a crazy life we live. They can both be so sweet and tender. But then in the twinkling of an eye, talkative twin lashes out without warning, or less talking twin throws a mega tantrum.
Here, she was so SO excited about the watermelon juice they were making “without a mommy watching us.” That request didn’t go far! I ended up doing more than three quarters of the work anyway. He he.
And violent twin can be so gentle.
Life is like that. For all of us. But before this, my highs and lows weren’t so dramatic,
The year is ending and we have not found the magic bullet that will kill all the pain. We haven’t found the magical elixir that will reduce inflammation. Instead, my inflammation has reached heights it hadn’t reached even before treatment.
A S marches on.
But, so does life and so does love and so does joy and so does contentment with I hope, some godliness a lá Paul’s biblical statement that godliness with contentment is great gain.
Nothing amazing or miraculous has happened. On the contrary, autism plus intellectual impairment has made life harder. The older our non-speaker becomes, the harder it is for us. Take yesterday. I didn’t actually tell our consistent blog commenter what one reason was, when she texted that she hoped there had been fewer tantrums yesterday. Oh not a chance! The day before and yesterday were the worst of the week. One reason? I gave her a little toy car to play with that she loved. But then, she wanted to open it up and remove the cute little flowers that were inside.
No can do.
And she could not understand that I was saying I can’t. Any denial comes across as if I’m either being purposely obtuse, not wanting to grant her her wish, or slow. So? If she continues pushing it at me, and screaming, throwing herself around and pummeling me, eventually I will do what she wants.
We had another day. She wanted an app on the iPad. But she couldn’t wait for it to download. Chaos ensued as it always does when apps SHE pulls me to put on, take time. I was at fault and I needed to make the iPad hurry up.
That’s what we live with every single day. It’s not getting better. The older she gets, the more she finds that’s not according to plan.
My son, my nine year old, I was so excited I put on video, immortalized it. He had finally learnt how to rhyme. Alas, he has now forgotten. The same boy who would make up rhyming words without being asked to, randomly during the day, couldn’t even strict given rhyming words.
My ten year old? Her dyscalculia is also not improving.
I’m lying here and I’ve actually got absolutely nothing amazing to tell you. I’m single parenting it as much as ever, more than ever. I’ve gotten worse physically, but I’m parenting alone MORE. Doing much..on my own.
Somehow I have to link all this with the fact that love, joy and contentment continue on. I have no choice. God requires it. And they are real. I feel them. I’ve removed dead weight from my life-the people who bombard me with their woes and then add at the end, “I haven’t forgotten you, I’m thinking about you daily.” Yeah well, actions speak louder than empty words after text full of my needing to be a shoulder to lean on. I can’t. And it’s freeing. It allows me to give more to those who give themselves too. To let more of their lives join mine. To not cast my pearls before swine because that’s what you do when you open up to someone who’s merely waiting for you to finish so they can tell you their drama.
I’m enjoying asking, sharing, showing the hard parts. Showing that life isn’t the glamour it seemed to be when I was holding everything in and pretending I was loved and appreciated. It takes many years to see emotional abuse and neglect! But now, I’m living in the truth of the strong woman I am, the daughter beloved by a King she doesn’t deserve. Loved beyond measure. My earthly worth reflected in those who share with me their heartaches while asking me daily about mine.
It’s hard to be there for someone whose days are getting worse.
It’s hard to ask when you don’t know how you’ll answer.
It’s brave and loving to ask when you know the answer won’t be good news. It brings joy and contentment. It’s God on earth. It’s giving of oneself. It’s what brings extra smiles above those my own children bring me. It makes up for days in chairs waiting for IVs of high dose cortisone to work. It makes up for bending down and falling against my five year old (thankfully she was seated!) who innocently and so very funnily asked, “ Mommy!! What are you doing??”
And then didn’t bat an eyelid when I told her I was falling! I’ve quit Lyrica- the famous fibro, depression med my rheumatologist added. I was dizzy, losing my balance and losing my ability to speak. It was scary. I’ll pray the next Biologic we try in MARCH (probably starting in April or May?) will be THE one.
So, I keep going forward into another year with hope..again.
I think this blog expires in March. Maybe I’ll see you again. Just know I’m alive. I’m in pain. But I’m loved and I am loving. God bless us all as we look back..and look forward.
Hello, my faithful Flydah. I’ve run out of steam. I can’t create joy out of trouble. By the time I have two out of six children in bed, I’m extremely tired and in pain. And I still contend with the middle two who might start screaming, necessitating my stopping typing to go find out why there’s a problem.
I have run out of steam. It’s actually not that easy to be bright and cheery when you’re in severe pain every day if your life. Imagine that!
It’s not possible to bask in the joys of motherhood when life, behaviors and reality show you that things are not improving in any sphere. How do you extol the blessings when you’ve just been pushed and pulled by one child, one hides urine in her wardrobe and another is screaming because she has been offended by something that is actually not offensive to us normal folk and your body and mind are weary from faking being ok all day.
I can’t enjoy homeschooling when I see how far behind some are. Not only because they aren’t progressing despite being in grades lower than they should be, but because assessments show they are lagging more and more behind the older they get. Ie, their development isn’t following a curve even if still below average curve. It’s a straight line of “Sane as it was three years and three years ago it was already bad performance for their age.”
I have run out of joy. I have run out of happiness. I can no longer create them. I can’t type what I’m not feeling. I wanted to encourage, but I am discouraged. And next year looms even scarier with even less “help” than I have NOW. And right now is not enough.
And so, I stopped my automatic payment for this blog. Next year March 25, it will cease to be. Flydah, my commenter and reader, knows where to find and often does find me there.. There where I find her too. And with her, I can be real about every single heartache.
I hope for a miracle. Maybe one day I’ll come back and will have found an affordable centre for all my children so that I focus on trying to take care of myself and the cooking etc only.
Until then, the burden weighs too heavily for a blog. Who wants to get a daily dose of a downhearted mother?
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.
But first, let me share a bit about school work. Someone commented so positively about how committed (or something like that) I am to a project I’m currently doing on YouTube (Studying the book Adventist Home) despite everything else I’m doing.
It meant a LOT!
So, here’s a snippet. My PDA daughter is VERY hard to teach. Interesting..She is truly a version of her mostly non-speaking twin! She does what she does, but differently. Both girl won’t sit down and discuss or be led in discussion or even naming items in a book or on a screen. I can’t teach like I do my other children. And my other children are already harder to teach than my first children. At their age, I could plonk a textbook in front of them, cook while they answer and then go through the answers with them. They were self teaching as soon as they could read. And they read at age four and three. We could do crafts with ease. Snakes looked like snakes. They understood verbal instructions and had hands that cooperated with their brains and with my instructions.
Today, it’s difficult. So difficult. I frequently regret doing crafts and these aren’t even difficult crafts. I do much of the work myself and even then, they can’t stick things down well. They don’t know how to place ladybug legs … And it’s all different children with different problems and only one of me.
Can you tell I’m burning out??
So, back to my ‘newly diagnosed but long known to us as our fourth autistic’ four year old. She had occupational therapy this week! The first time ever!! Some celebrate “First day at school,” I celebrate being able to attend therapy. Something my most desperately in need daughter can’t yet do. She was excited but nervous.
She had had a headband on. When it was time to go, she asked to wear a blanket on her head, held in place by the headband. And this is an adult sized blanket she was talking about so I said no. She did the next best thing. Took a hat, put it on, put the headband on the hat, took a teddy and took the blanket. Armed and ready for war!
Thankfully, she enjoyed it. She enjoyed being “asked questions and playin’ a lil bit.” So, we are set for the next session.
As for home education? I’m back in the thick of hectic vision therapy exercises. Too many, people. I’m not well enough nor have enough time per day. So I’m doing something daily. Just nitpicking every single exercise. But, such is life. My girl can’t sit still when I’m talking, doesn’t listen, tells me she’s bored…
So, given how well she concentrates when watching my Bible story videos, and how well she recalls things I say, I decided to look at the upcoming topic, record myself (try finding peace and quiet with six children!), edit it, add visuals to explain things that might be new to her, add movement breaks either led by me or by online videos I edit into the video, THEN teach via the TV. Sometimes, I add songs. So I first have to find relevant songs -unlike the Bible videos where all the scripture tunes are made up by me- and then learn them and then find the karaoke version and sing along.
It’s a lot. And that’s just one subject.
But it’s rewarding. The peace and concentration is amazing. And the middle two get to learn with her as we watch.
I also did the below for them, which they’ve watched a few times. This was just a general education video I made up for them, not part of Neilo’s Science curriculum.
My title. I’ve had tummy troubles. Began with pain last week and has ended (thus far) with a case of the runs. My rheumatologist wants to be prudent so I am suddenly booked for a colonoscopy and gastroscopy. Something I didn’t want any time soon! The pharmacist said there’s a stomach virus going round. Given how I ended up in hospital for the vomiting one, this might just be the current bug and nothing worse. I hope it’s not a Coesntyx side effect. I want to give Cosentyx a shot at working. But it’s best to be prudent. If my NSAID or Cosentyx has caused an internal problem, better to figure it out soon.
And so, as the evening wore on today. and I felt guilty that I hadn’t done therapy, I called my middle two and made them do one each. I laughed when my son then asked if I wanted to see something he’d made. I replied, “No.”
This was unusual and never happened before! They both froze and said, “Huh??”
It didn’t compute.
“Mom always cares about what we’ve done.”
I giggled at them and then allowed my boy to surprise me with his “robot.”
You can definitely see what it is without my having told you what be created. 😉Right?
I love how proud he was of it. May they both ever be sure of themselves.
What it’s like (for me) waking up in the middle of the night.
If you happen to be on your back, you feel terrible pain in your neck. As you wake up, you realise it’s also in your SI joints, then elbows and hands. Every finger feels like it’s on fire and your elbows like someone is smashing them with a hammer. Your knees protest, are stiff and painful, and when you try to move your legs, they shout NO!!! Then you realise that your knees have also joined the cacophony of pain…
If you were on your side, the shoulder and arm you were lying on are screaming. Your knees too. You shift, but the damage has been done. Your pain refuses to dissipate. Your neck joins in as your stiff fingers also make themselves known You shift, but the pain refuses to leave.
And hours later the pain does react a bit and you sleep again. Or it doesn’t respond And you stay up from midnight to the next day, trying to function despite falling asleep while reading aloud to the children durinhg the day.
If your husband is in town, you lie awake, desperately hoping he will soon wake up so your pain meds can be taken without feeling guilty for the noise they make (extras because I’ve taken ‘all’. Jjumy meds throughout the day.)h
I can’t wait for these to pass. Every single day pain wakes me. Hmmm
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.🙏🏾❤️
And it coincided with my son’s birthday, the one whose heritage we don’t know.
My daughter’s birth mother has no idea how blessed I am to have her. To answer any questions, to explain something and to just be a big sister to her. I like to act, give, care and better yet, I have another young lady who is extremely invested in birth mom’s future and that of her children and grandson. Seeking bursaries for her teen daughter’s education next year, looking for anything that can help earn money, like learnerships..though time is now too short so daughter is now aiming to go to university next year.
But what about Micaiah? Where is the woman who gave birth to him on September 24? Is she ok? Did she have more children after him? How many did she REALLY have before him?? Do I pass her in the mall? Is she one of those who goes hunting for expired food? (Three people were shot dead and fed to pigs recently. A company dumps its expired food near a farm and a mother and a married couple went to pick what they could find in the farm boundaries. The owner shot them (allegedly) and told his workers to feed them to pigs. There is terrible suffering in our country. I know some who are that close to starvation that they’d give their lives for expired food. Is his birth mom still on the brink as the social workers claimed she was? I wish I knew.
For now, I’ll celebrate the boy I have, who I have raised since he was four and a half months old. A boy who has brought me to tears because of the horrible challenges he has faced. And who has made me laugh at the weirdest of misunderstandings and random use of highfalutin language when he clearly doesn’t know the meaning of the word he’s just used. I am so thankful for his presence and his life. We have more difficult years ahead of us, but what I love for him, is that he doesn’t know it. He is happy.
His little sister- age four- was trying to write number ‘eight.’ She failed once, I held her hand for three more and then she did her own two that were clearly recognisable as eights. My son noted later on, “Hmm, and I still can’t write an eight!”
No self pity. Just a fact. As if he’s proud that she can do what he cannot. I hope that that lack of concern lasts his entire life. He deserves as much of a happy go lucky life as he can find.
Happy birthday my boy. We are blessed to have you in our family.
I’ll begin with the ugly. I am coming to the realization and understanding that AS is progressive not merely in terms of losing mobility, but in increasing pain! I wrote when I was diagnosed, “It hurts knowing that today” which was bad “is better than I’ll be tomorrow.” But we had hope. Biologics were meant to save the day! They were meant to slow it all down and reduce pain tremendously and you’d regain your life.
Here we are a year later and none of that has happened. I’m now on my second biologic and even with spring coming in, no reduction in anything. My husband was worried recently that at the trajectory I’m going at, I’ll not be in a wheelchair in ten years as he originally feared when I told him the diagnosis, but next year. I told him that my secret hope was that it was because it has been winter and I always had awful winter flare ups when I was a teen and adult and perhaps things would improve in spring and summer.
So far, that has not happened and that is on double strength pain meds. I feel stuck and extremely but internally distraught. I don’t start limping after a few minutes of taking a walk anymore. I go walk even though I’m limping. And stiff. The stiffness is new. It’s as if my right leg is being held together at the pelvis not by a joint, but by concrete and I have to force my leg to swing forward. When people stared at me when I could tell they are being like ‘the Karen’ and thinking I shouldn’t be parking in the disabled bay, I exaggerated my limp but I don’t need to. It’s there and it’s real and anyway, I needed to be closer to reduce how far I travel, not because I’m broken.
I’ve realized that whether I’m lying down, seated or walking, no position reduces the pain anymore. Lying down used to reduced the pressure on my SI joints. Now, there are so many painful bones that lying down makes no difference. Though it might help with the persistent fatigue.
Basically, my new normal is ever present pain. Everything is done despite the pain. Everything is done while in pain. And nobody knows.
I’ll continue this another time. I stated that I’d “begin with the ugly” because I had wanted to mention something neutral about people’s perceptions of autism. I had much to type but my elbows and shoulder and fingers ache too much. I often think of retiring the blog. It hurts too much to type now.
A life devoid of real happiness because it’s clouded by constant pain, bad pain. That is me- now.
So, we’ve had some work going on in our yard prompted by a variety of reasons. Firstly, I have ALWAYS wanted a swing in my garden for my children. I wanted one when I myself was still a child. My parents bought my sister and I one to swing on together where there’s push pull and the township children enjoyed coming to use it. I wanted that for my future children.
Secondly, our screamer screams when it’s time to leave the public park. Not nice when members of the public are around. She also is hard to handle, goes after other’ balls they are playing with, touches people’s bicycles…Our talkative twin also adds to the chaos when she argues that she needs “just five more minutes” after multiple warnings.
Thirdly and sadly, there are weird people hanging around. About a month ago, as the teen daughter and her three younger siblings walked, a man in a B class Mercedes Benz asked them if they wanted a ride. They said no. Then he asked if they wanted to go to the arcade at Century City to play. They kept walking and saying no. He asked if they were sure they didn’t “want to go have fun.” *shudder* At that point, I not knowing what was happening but knowing it was starting to rain, told my son -who had stayed behind with our refusing to walk twin child – to take her into the car (That she always loves) and go fetch the others before they got rained on.
As he drove up behind them, seeing talking to the man, the man put his hand out the window to wave him around his car. When he realised that the children knew the driver and were going to the car, he zoomed off. As my teen told her brother what had happened, he then tried to chase the car. (Don’t ask me what he’d have done.) They lost him at an intersection.
Very disturbing.
Two Fridays ago as the same children were walking, the man slowly drove up behind them. Our teen noticed but pretended not to but then the two middle children saw the car and pointed at the man, who then sped up. Now, they were scared so our girl told them to run to a corner where they would go in any direction and the man wouldn’t know. So my poor, terrified children – age 28, 9, 8 and 4, ran.
That image is haunting. And so sad. Makes me tear up even typing it! I hate criminals!
I bought her CS-gas (tear gas) to spray at him if he ever follows them and tries to lure them into the car. And booked people to come build a jungle gym in the yard so there’s less walking outside.
Snippets of the building time.
The Pharaoh hat has a strange rubber thing that has been eating at our girl’s hair, so I coaxed her into only wearing it on Wednesdays and when they go out in public. They won’t understand why she has a pillow case or skirt on her head, but they’ll understand THAT!
One man asked if she’s Cleopatra. She has no clue who that is but answered indignantly, “I’m Pharaoh!”😅
One wanted to use the loo but waited for me to finish explaining some school work to my son, then asked if I run a daycare centre. Haha. Never thought that that is what it would look like. Told him nope, these are allmy children.😊
Yesterday they came to fix a few issues and he (White supervisor, Black workers as is the norm in our country) started talking about how the poor are getting poorer and how distressing it is. I thought not of ourselves or my employed friends whose salaries are affording less and less, but of those who have no job at all and agreed with him.
Then he says, “In the 80’s it was better. I mean, yes, I was a child, but there was less of this then. Poverty wasn’t bad back then but now, the world over, everyone is struggling more and more.”
I thought to myself, “Man, do you know who you’re talking to? I was also a child in the 80’s and it was AWFUL for US! Tear gassed in the ghettoes your people forced us into. Police coming in to find and kill!?? Police causing rioting and fear!? Me seeing stabbings and people being burnt to death. And our people were dirt poor. Starving poor because we didn’t ‘deserve’ much pay for the few jobs we were ‘allowed’ and legally trained to do- menial, cheap labour. Oh my! It was worse back then!”
It’s scary how White people either don’t know what life was like for Black people during Apartheid, or they forget that Apartheid was recent! They had fun in their safe suburbs. We lived with guns, fear and flames! Add the grinding poverty where we were forced to take jobs that paid peanuts, ‘Black’ hospitals that really were almost like badly run clinics, disappearing neighbours and relatives caught my police to be tortured, aunts fleeing into exile out in Germany and the US, and high birth mortality rate and you have a time when things were much worse than they are now for us Africans of Africa.
But, he also said I wouldn’t know as I wasn’t born yet. I was too busy laughing internally and wanting to tell him how old I am but then his staff called him and I couldn’t.
I wonder if anybody anywhere will ever guess my real age. Even at church there’s a newcomer who was shocked when a young man we once even counseled before his marriage referred to my husband as “old man.” But he’s younger than you! The man exclaimed! Oh my! I therefore bet he also thinks the man is younger than me too. Maybe if my husband looked HIS age, they’d know I too was older?? Or they’d just think I’m like those celebrity men who date women 20 years younger than they are…
So yes, that distracted me too as he spoke and I didn’t get a chance after he was called, to revisit that comment. But I live the reality daily. Life was not ok for us in the 80’s. At least now we have the chance to earn what they earned. And some of us do indeed earn it and can help others who are unemployed or orphaned.
As my nine year old said, “So..If you and daddy are also helping Aunty P” (her birth mom) “then dad had better not lose his job or they will starve even more.”
Yep, and so would another dear one waiting for the job she qualified for but willing to do the ‘menial’ work reserved only for us previously unskilled, un-educated by Western standards people of the soil.
Things are better but will never be ok till the kingdom comes.
They said I should write a book 