Author: Grace by any other name

God-lover

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.🫣

The Wise Security Guard

Grace by any other name2 Comments

A few times now, I’ve parked right in front of a Black female shopping centre guard. First I thought she was suspicious because I didn’t ‘look’ disabled, but my disabled badge halted any potential talk.

Today was probably the fourth time I’ve seen her, so this introverted ME who can’t speak isiXhosa fluently, asked her if she never takes leave; why she’s always there when I go. She laughed and told me she has six days on and one day off.

Then as I always do, I started worrying about her based on my condition. As in, I imagine that everybody suffers the way I do. When I came back out the shop, she clearly felt like talking so she immediately said something which then allowed me to ask if her feet, lower back and mid back don’t get sore from standing for so long. Six days in a row, to boot. She said no, her back has never gotten sore and her feet start complaining only on day five. She stamps around and shakes her feet in her shoes and is fine.

I told her I was relieved (because I truly pictured guards’ feet in agony. My feet started crying when I was 23 years old and working on a huge warehouse as a picker so I think because it’s my norm, my stupid brain feels bad for everyone else because it forgets it’s only MY norm.

She added that she loves her job. She said that with her salary she can buy a car, buy a house and be well fed. And then she said something too many of our African folk don’t want to understand. Class or status should not be what drives our decisions. Not when it comes to employment and getting out of the poverty cycle poor. She said cashiers might look ‘smart’ sitting there, feel like they’re ‘better’ at the tills, but she’s happy with the sun beating down on her when it’s hot, and rain when it’s bad because the salary is worth it.

I wish a relative of mine had had the same understanding. They felt certain jobs were beneath them, and that office/seated work is the best. That person became extremely poor as a teacher’s assistant in a township while the job I suggested pays more than double what this person gets.

Get rid of pride and just do what will help you (and your children) to THRIVE! (Illegal) immigrants do it often-taking a job ‘lower’ than the job they had in their home countries. ANYTHING to be able to send money home.

We need that same self forgetfulness and humility.

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.

Mouth sores and hungry girls

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I gave up and emailed the rheumatologist yesterday, asking if they can recommend anything for the mouth sores I have in my cheek, tongue… They aren’t as bad as they can get, but they are always there and can’t be ignored. But it’s a small price to pay!

I am praying that this is the start of a new me. The beginning of a journey back to the old me. I washed dishes last night. The most recent time I tried, I hurt my shoulders and wrists just washing one pot. So I stopped. But this time, last night, they didn’t hurt. I got through multiple dishes for the eight of us! Yes, it wasn’t like the old me. I had to stop three times and go lie down and wait for the back and hip pain to subside. My fingers are so painful and swollen list. Bu he f c. V. And by the time I was working on the pots, I was lopsided, trying to take pressure off my damaged right leg. It was grueling. I won’t lie. It was awful. I regretted it big time. Do you know how many dishes and pots and bottles a family of eight creates!? And because they are sick, there are also mugs of the famous ginger garlic mix too that needed washing.

Which reminds me of another win!!

My talking town at the ripe old age of five and a half years old is finally drinking water!!! I tried so hard to get the twins to drink water. The first two were easy! By age two, water was normal. The middle two were drinking but Amarissa pours her water out if I’m not watching her. But the twins! They hated water. I ended up buying a pure fruit juice concentrate and ‘adding’ it to a full bottle of water so that I feel a bit better. I could see the water. And I only add a quarter of the recommended amount into it.

But still, I had wanted them to just drink plain water! And my talking twin has finally done so since last week. I’m really happy, people!! And she’s so proud of herself because she no longer needs to chew her half Amfexa (ADHD tablet) in the morning and quarter in the afternoon and two sleep meds at night. She can swallow them with water!! And she’s proud of herself! Though she one day when she was just feeling so miserable that she struggled. I’m so proud too!

I’m also thankful for one more thing. The Rinvoq! And masks! I’ve been double masking because I’m so terrified I’ll get sick from the children. It’s so bad – their sickness – that I cancelled this coming week’s occupational therapy sessions for them.

It’s been torture. Watching them unable to eat, seeing them listless and seeing my nine year old so weak that he slept for three days. I almost felt like a bad mother for not taking him to the doctor. But he’s got his energy back! And their appetites are starting to come back.

Check our nine year old going to get something to eat at 2:58am!

Then, there I am sleeping and the door suddenly opens wide and in rubs my five year old. Shock of the decade! And she was so bouncy and full of energy🫣She said she’s hungry and wanted an apple! She’d also gone to her sister’s room who also came in and said she too wanted to eat (again!!)

It was crazy! So awake and I so in need of sleep! The commotion then woke non talking twin.😆😆My life is never boring!

And so, as I slowly start feeling stronger than I have been, I keep praying it improves so I can one day go on a trip to a park or something with my children. And maybe the next time I try wash dishes, it won’t hurt as bad. And hey, there will only be six to wash up for with the teens only returning in July. Please let there be an improvement!🙏🏾🙏🏾🙏🏾

I am typing here with a sore throat and wishing hard it’s just the Rinvoq. It’s been causing my throat to close up and it feels like it’s swollen. At night or even when it has made me suddenly fall asleep while I’m working during the day, the throat even closes up and wakes me as the air struggles to pass through. It’s something I need to keep an eye on. One of our members was waiting it out but eventually went to the doctor. He told her if she’d waited another two days, she’d have died in her sleep because of how swollen her throat was and how it would have stayed closed and deprived her of oxygen.

But, a sore throat is how the children’s sickness began too. Two weeks after it began, they are still not well. The congested coughs are awful to hear. How would I survive? And where would that put school given I haven’t taught since two weeks ago? It would be a very long school holiday… and bad news for my lungs.

Who would ever hope that a symptom they’re having is a medication side effect? Especially of one they hope to be on for many years before my body gets used to it and it stops working.

And how many people sit on the toilet and then wonder where they’ll find another rheumatologist to help with their incurable disease when their own rheumatologist retires? I hope to still be alive and mobile when she does. But then who would I go to? She’s the best …

Anyway! Let’s hope for no more random hungry girls waking me up. I heard the door handle and thought it was burglars, people! I was scared! Two blocks away they’ve been burglarizing people’s homes on one specific street at around 3:30-3-50am! They gave me a heart attack! And I wasn’t wearing my mask.🤪

Can a mother forget her suckling child?

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Some sell them. The woman who sold her nine and 11 year old daughters to be sex slaves and sold the now 13 year old to a lawyer… She is not fit to be called a mother.

I will never forget Ammy’s birth mother’s words when she met us when our daughter was leaving foster care and coming to us. “We loved her too much to just dump her on a field or in a bin like others do. But we knew we couldn’t raise her…”

So how??? How did this woman lose all sense of love? I heard of this precious child’s disappearance and immediately said to my husband, “Mom is dodgy. How do you leave a little girl alone with a boyfriend of yours? How do you trust him?” He said he wasn’t interested in the case. And so I started discussing it with two other ladies, one of whom said she is no longer following the trial.

And so, I come here where I’ve written about her before. I know Saldanha. I’ve been there a few times. Middelpos is not some unknown far away place. This was too close to home.

The community searched for Joshlin. Things felt even worse when the mother of the missing child told searchers to stop looking for her. She didn’t look very desperate when she appeared drinking milkshake at a restaurant smiling and happy before a week had even passed.

Her story about how and when her daughter went missing also didn’t make sense. And THEN, her (Joshlin’s mother’s) sister said publicly, that the mother, Raquel aka Kelly, had said she’d sold the child to a witch doctor. She said Kelly was a drug addict. Kelly admitted during the search that she indeed was an addict at the time.

Things looked worse. And so, we were not surprised when Kelly, her boyfriend and a friend, and another friend too, were arrested for trafficking. But we were sad. Because we still didn’t know where the child was.

And today, we still don’t know. And my heart breaks because I know the Andrews family is grieving. They are a family who had seen how neglected Joshlin was and had asked Kelly if they could adopt her.

She said no.

And now, here we are. Found guilty of kidnapping and human trafficking today with her two co- accused. (The female friend having turned State witness and also facing a sentence but shorter than that of Kelly, boyfriend and friend.)

The judge told them they have time between now and sentencing to think and reveal the truth about who they sold the child to and what was done to her.

One witness said Kelly sold the child for R20 000 (an amount that has been touted since the beginning) because the witch doctor wanted her eyes and skin.

Something I can believe. Look at how they hunt down albinos for their skin too.

Where is Joshlin? Even if her life has been snuffed out, we who care want to know where her bones lie.

I have never forgotten any of the family friends who went missing. I haven’t forgotten the dementia mother from our neighborhood who went missing in our three years ago. And so, I will never forget Joshlin.

She could have escaped if her mother hadn’t wanted money for drugs. She could have been loved and nurtured and NOT SOLD.

Six years old…probably forever six. I don’t know which is worse. A muti murder or being kept as a sex slave.

I want to know what Kelly told her trusting daughter when she handed her over to be tortured.

We who care, we who love children who haven’t been born from our hearts, are heartbroken. The community of Middelpos is not at rest. How can we be at peace when we don’t know where our child is?

Onse kind (Our child), As she became known. We all want answers. How does a mother do this?

“Dodgy” didn’t begin to describe this ‘mother.’ I am so sorry for the Andrews family who loved her and actually wanted to raise her, more than her mother and father ever did.

God shall wipe away our tears…

A Book About My Ten Year Old

Grace by any other name2 Comments

Ok, it’s not REALLY a book written about her. But it could have been! It’s by a foster carer who fostered a little girl who was also ten years old, back in 1989. This poor girl had been sent away by her biological mother! The mother said she was mischievous, naughty, always trying to irritate people and “too much to handle.” And like all the other foster carers who would come to take the child and then send her away, added to these complaints was that she irritated other children in the family, she ENJOYED BEING TROUBLESOME.

And so, this poor girl, chased away because she was unbearable, ended up with a couple that usually took on ‘challenging teenagers.’ And every.single.thing.she.did, reminded me of Amarissa. Even before they finally got an appointment to get her assessed, I knew. When the schools kept suspending her for being disruptive, not focusing and even to this last set of foster carers for whom she was hard to deal with, it was clear.

She had ADHD. And sadly, there was no medication back then. But the child, the child was so relieved! She knew she hadn’t been disobedient, clumsy, unthinking just to irritate. She was excited, “I have a ‘thing!’ It’s not me! It’s my brain! I have a ‘thing!’”

Sadly, instead of this showing the mom that the poor girl wasn’t just being obtuse on purpose, she then said, “See? I knew there was something wrong with her. I don’t want her back.”

This girl was like mine in so many ways. Climbing up high without a care. Forgetting and being distracted. Fidgeting and always moving around. Finding school work boring. And like my girl, the foster couple felt that though she was extremely hard work, she was a lovely girl who made your heart warm.

Indeed!

I’ve often thought of how much abuse there is in baby and children’s homes here in South Africa, and how they’d have treated a child like my ten year old. I didn’t ever think that she might have been sent away multiple times. They were similar even in not having bladder control during the day!

But she was lovable. How sad that the behaviours became larger than the child and her need for stability and love; the need for a healthy m self confidence instead of being told she’s being purposefully naughty. The number of times she had to explain that she didn’t do her homework not because she was lazy, but she honestly forgot there WAS homework.

My child might have suffered a lot.

She’s climbed to the top of trees. I gave up earlier this morning when she didn’t understand WHY we thought it was unsafe and crazy. As long as her little sister knew not to copy, I knew we’d have no problems.

God bless all the different types of parents who love children others deem unlovable.

I know I complained to others that our girl’s foster mother was cold when we met the day our girl was coming to join our family. Only when I ignored that and kept telling her over the weeks and months how we were settling in with our girl and just being kind despite the negative vibe I felt, did I realise the love she has for these babies. It was when she said she was feeling very down and worried because the new parents of the baby she had given over weren’t very warm and loving to the baby so she was scared they’d not love her, that’s when I realised it was grief making her cold. She was trying to stop from being sad. She struggled a lot when babies had to leave. Sometimes she had a good feeling and sometimes not, but she always mourned the baby. Thankfully, she didn’t have a negative vibe from us, it was pure grief.😄

Again, God bless all the different types of women who MOTHER the innocent but challenging. So today, I am thankful for the many mothers in my groups whose children are like mine but have never considered giving them away. Parents whose children are extremely violent and hurt them badly, leaving scars. But still don’t even consider placing the child in foster care. Now that I know people actually do that, that it’s not always about the ability to feed the child etc ONLY, I salute all loving parents of challenging children who instead of wishing the child away, only wish for the hard things to go away.

Even this! Throwing things out the window when told to tidy up. (Now returning them after being caught!) Just like the girl in the book!🤦🏾‍♀️

The child stayed in foster care and even as an adult, always visited the one family that saw her heart, not ONLY her behaviours.❤️

A Little Child Shall Lead Them

Grace by any other name1 Comment

“Suffer little children and forbid them not. For of SUCH is the kingdom of heaven.” Jesus.

Last night, my heart ached as this little one coughed and coughed the worst of all the sick children. My heart broke for her. That deep chesty cough is scary to me as I can just picture the mucus growing bacteria and causing a bad infection. And also, she had been extremely sleepy and tired, so to have her sleep disturbed after she’d complained all day about how terrible she felt, was unjust.

So as I lay, I prayed. Prayed she’d be able to sleep soon.

In the morning, mask firmly on my face, I went to check on her. The conversation went something like this, “Is it morning time? Ok! I was coughing ‘n coughing ‘n coughing at night and so I prayed. I prayed to God and He stopped the coughing! And then I sleeped! I love God! He told me He loves me and He made me feel better! He’s the Best Man!”

🥹😊

I told her I’d heard her coughing and I had felt very sad. She responded with, “ Did YOU pray?” Boy was I glad I could say YES!

(Before unsolicited advice from any reader, yes I know it all and do it all. I’ve made all homemade remedies and bought some more echinacea and hot toddy cough drops with echinacea, vit C and what not. Thankfully the one we’ve spoken about it with knows not to give it!)

Then she followed me into my room, found one of the sticks I use for Maths for Ammy and said, “You can use this like a pen! You can write ‘JESUS!’”

THEN, I woke up the one who began everyone’s descent into sickness (minus the teen sisterand us adults for now). My sweet Ammy who had done this outside.

Tiny altar of love

Her conversation wasn’t as light at all! She opened her day with, “I don’t know how I’d survive without you if you died.”

Ok then…We are back to THAT! Poor girl. I reassured her not that I won’t die because I don’t know that, but that Vi loves her, her aunty Azola (my friend who loves them with all her heart) would check on them more often. But that I loved her and we would pray that I don’t die any time soon. I gave her a big hug while trying not to breathe in and hasten said death by getting sick. And hopefully she will get it one day. I’m irreplaceable, but she is loved by more than just me. There are others who are patient with her ADHD symptoms and enuresis problems. There are others who are gentle. Vi even laughs about the yucky things we find. I want her to know there are others who’d be her safe space. Who see beyond the behaviour to a child who once asked, “ But won’t God send me to hell? Because I do naughty things on purpose. I can’t stop myself. Aren’t I bad?” She has people who will never hold her behaviour against her but will continue to teach her the best way to be.

It’s like one of the suggestions given us regarding her self harming (Her anti anxiety meds we’ve moved to have reduced THAT) and destruction of clothing : Provide old clothing she is allowed to destroy.

Here’s to more of God and less worrying about my death.🙏🏾🥹

Seeing as my ten year old loves writing, I’d better work fast on finding a ‘speech to text’ programme (Yep, lots of recommendations to work against the challenges caused by her earning disorders) for her so she can say everything she wants to say. Finish her thoughts and be more understandable.

And as I’ve been saying, her poor brother has more severe challenges so I foresee him not even being put on a dysgraphia curriculum to try learn to write better, but straight into speech to text software like one of Ammy’s suggestions. My poor boy!

PS after handing the above to me, my girl asked what an anniversary is and how it’s celebrated.😆

My poor boy…

Yet he can READ so well. The brain is a curious thing.

This has taken me all day to write. Let me go see if my girl feels any better about my dying. And WHY she’s so stressed about that.

I’m back!

She is feeling less scared but doesn’t want me hanging around them while they are sick. We can hope. Pray. And watch.

Homeschooling Wins : Therapy Mom

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Lo, children are an heritage of the LORD: and the fruit of the womb is his reward. Ps127:3

This is my ten year old girl in her elk onesie hugging her five year old sister in her rabbit onesie. Her heart is pure and sweet and she gives her heart to her tiny sister even when she’s being rude to people. (The joys of copying what her older teens have taught her to say.😏 Like “Shut up” to older people – not to me. She knows I know we don’t use those kinds of words so she keeps them for when she’s moody with strangers.)

My second girl loves hugging her sister, kissing her, and me. Out of all the chaos of feeling abandoned by her birth mom has come a stronger feeling of belonging and sense of family. She always calls me “My mommy” as if to remind herself that she is mine in every relevant way and I want her. I chose her, as her little sister said. She knows I’d rather suffer than allow her to feel pain of any kind. I am her safe space. What a gift!

And speaking of safe spaces. I wrote down the recommendations I might not already have been implementing for my girl. Turned out there were very few. I’m already doing a lot for them-not just her- and it was written in the section regarding how academics would stress my angel more and so we should think of her doing vocational or practical training in the future. One of the strengths was that she is “already in a personalized, low stress educational environment.” HOMESCHOOL WIN! As in, I’m a mother who doesn’t care about academics to the detriment of mental health, and am aware that you can’t force your brain to do what it cannot. Also, the report mentioned that she can’t say why she’d improved in some aspects except for it having clearly been my intervention, vision therapy and occupational therapy. I’m part of her intervention team! Man, it’s the second time this week that someone has seen the effort and time and work it takes to raise, educate and love my children.

It gets lonely doing this over and over again, nobody to discuss your plans with, nobody to look at recommendations with and help find affordable help. Eg. The one recommended ‘curriculum’ for dysgraphia is extremely expensive. But there are others too. I’d just love to have a partner sharing in the search for aids for my children. It would allow me to look for help for a different challenge or for a different child’s challenges if I had a partner, a team mate in this parenting special needs struggle. Being the only one doing exercises/home work with the children is stressful. If your bones are just too sore and the fatigue too heavy, you feel guilty that it means a day has gone by with nothing therapeutic having been done.

And I think that is also why it is so meaningful when someone out there sees the impact and effort of this lonely work. My children have no clue how many hours I spend trawling the internet, converting dollars or pounds into rands, waiting for another pay day, searching for recommendations from other mothers in the trenches. We don’t want to be thanked. But we NEED to be acknowledged.

So, now what for our little ones given their struggles?

This week I added on another ‘executive functioning’ session on impulse control. We bounced (They did. I just skipped) and when I’d say “sleepy sloth,” they’d immediately have to get down wherever they’d been bouncing bunny and curl up and rest. Feel their heart beating, note the breathing. Again, from a reputable book I searched for and found and bought and put into practice on my own.

Things our ancestors wouldn’t have known to do. Knowledge is power. How many children and adults out there can’t reason well and perhaps if they’d had executive functioning support and help, might be a bit better than they are now? Another thing that stood out in the report is that some of the issues might be caused by an impairment in intellect. So… How many people have been labeled as ‘not hardworking’ or ‘not meeting their potential’ when actually, they have? Do parents even bother spending time with their children discussing their challenges? My girl is extremely motivated. She tries everything and asks questions, something the report also brings out. If parents don’t engage with their children, they will assume the child is disinterested. Parenting needs to be intentional!

Another thing I’m enjoying is the joy my one five year old has for school activities and fine motor tests etc.

She was truly convinced she’d not manage a puzzle that had more pieces than normal. But did it, and then kissed the puzzle. She loves learning! She frequently wants to do much more than I’ve planned for the session, and is working as best as she can.

And we have to smile. How many children would think the capital B is like the tablets of stone Moses had? Only autistics and other cool kids. It’s true, it does look like popular depictions of the Ten Commandments- sideways!

She always finds a way to make me smile. While searching for objects in a picture. and counting how many there are of each object, she had fun pretending to be using binoculars. That is not typical. And I love it.

No other kids in THIS family have done that, I really pray she never stops enjoying learning. And always inserts her own ‘seasoning’ into her classes.

Not forgetting my son. I asked him to take his “building” away and he tells me haughtily, “ It’s a CAMERA, ACTUALLY!”

So, we resume OT next month and continue with vision therapy. My son had a so so mini assessment. Stuff I’ve BEEN saying is not working during our home exercises is definitely not happening for him- like eye convergence. So we’ve planned ten more sessions for both children for now. That’s also what’s next.

Our last born is nowhere near ready for any therapy. And I have no idea how much of the ‘educating’ I’m doing is actually going IN. But hey, she also deserves to be mentioned🥰❤️She’s still scared of people and can’t engage with them long enough to learn or do something at their bidding. She now is in the habit of grabbing her siblings’ food while they are eating, even when she hasn’t finished her food. Our life is one of constant fire fighting. She wants the large bowl or pot and a larger amount than anyone else. So it leads to a lot of cornflakes that we know she won’t eat. And if I forget to hide food in the cooler box, tofu eaten in bulk though thankfully the actual portions eaten are minuscule most of the time. If one has left their bowl of noodles carelessly on the counter to eat later, she will eat it without batting an eyelid. As if it was out there for her! You just have to laugh. It relieved the constant tension of wondering what will set her off. And, to be honest, her twin, too. I do have three children who need anti psychotics. The girls are much worse than their brother!

I will focus more on incorporating all the things from the various textbooks I have, and relax. God will help me find a vocational/practical curriculum somehow, seeing as our government hasn’t given us a school. For now, I focus on treating the bad cold complete with sore throats and horrible coughs that has made them miserable and my non speaker even more difficult to control, harder to keep her from crying and screaming. I hate autism. Did you know that? And dealing with the fear I have of catching their bug. I don’t need further lung damage. I just want everyone to feel better asap and nobody else to catch it.🙏🏾 Every Sabbath has a challenge.😅

Hoping that my children never forget how much I love them. They know it now. I hope they know it always. The girls are currently obsessed with taking photos and video… And that’s also what’s next. Continuing to smile when they tell me to, and looking at every picture or video they show me. Teaching them that mom loves them and is interested in anything good that interests them.

Hahaha Too Dramatic!

Grace by any other name1 Comment

Nobody ever tells me (unless a friend or two catch a photo of me like a friend did who saw this photo on my profile) I look good. So I fight the past on my own. If I like my look, I take a photo of myself. My ten year old (and her siblings) used to visit my parents. Heard the snide comments, the yelling..and could feel the dislike emanating from my mother who didn’t accept her and our other adoptee. She asked me maybe three weeks ago, so randomly! “Mommy, how come you are so kind and loving? Where did you learn? How did you learn to be nice when your parents weren’t nice?”

So you see, even though she never heard the comments about how ugly I am, about my forehead being bc too big and my lips being “embarrassing as if I’m a drunk,” she knew.

And it felt awesome knowing she feels great. That I love her and she knows it.

So..call this a late lesson in loving myself. But honestly, I took the photos because I can still stand up straight. AS hasn’t taken that away from me and I’m so grateful that if I’m just standing still and not walking and limping, nobody would know I have a disability. I will photograph every moment of normality when I feel I look nice in my eyes, in case it ends one day and I only have photos to show me who I used to be externally.

But, that’s not the aim of this post! Because I’m sick, the minds of my family are a bit… I think they carry trauma!

Exhibit A. The week the teens came home on holiday, they had turned on one of the educational videos I put together for the little ones. As I walked towards the TV, a song was playing, “Circle, circle, can you draw a circle?”

As I watched the perfect circle being drawn, I replied to the question, thinking of my not so great circle drawing, “No, not well actually …” My teens both exclaimed, “Oh no!” and “ Oh, sorry mom!” I asked why in the world my poor circle drawing would elicit such responses!

They said they thought I’d said, “I’m not well, actually!” And became worried.😅😅😅

Exhibit B. This morning, I read in an AS group that we ‘should be’ dyeing our hair blue next month for AS awareness. So I tell my husband, “I’m meant to dye my..” He interrupted in shock. You’re meant to DIE?? Why??

I cracked up again! He was truly wondering why I had a “I should be dead” idea going on😆

Behind the laughter, is the wheezy chest I haven’t told them about. I am faithfully using my pump but I don’t think my body is reacting as it should. (YET) It’s the body so sore and so tired that I literally feel like I am dying. It’s the fear that while I’m waiting for the Rinvoq to start working, it could be killing my heart or liver. Two of our members were hospitalised this week with blood clots in their lungs thanks to Rinvoq. The side effects that are happening almost daily to our group members are so bad I’m not telling them about them. So I actually AM living with a fear that I’ll die. After all, what happens to the members who DO die from blood clots? We won’t exactly hear from THEM. How many are there?

And so, I ignore all the anxiety and laugh at my poor family that thinks I’m “not well actually” and think I’m predicting my death. We all laughed. And we need every moment of lightness possible.

It is Confirmed!

Grace by any other name1 Comment

I was referring to the stupidity of having to wait till he was three years old for an autism diagnosis for my son when I knew when he was six MONTHS old that he was autistic. So we were holding on, waiting for my girl to be the right age to test for what I always feared- dysgraphia and dyscalculia.

And finally after a long wait for the report of assessments completed in February. It is written. My poor angel has them indeed. Basically it’s a disorder that stops you writing clearly and well (‘dysgraphia’), and a “specific learning disorder of mathematics” aka “dyscalculia.” She can’t learn these things. These are incurable and hers are quite severe.

The final conclusion is one I’d drawn last year when she asked, “ mBut what job will I be able to have?? Can I go to university? Isn’t it too higher grade for me?” I told her I suspected it might be too much but there are jobs where she doesn’t need to have done academics. I’ve been following The Living Link even though none of my children are the right age. It’s a hands on practical training place for disabled (in different ways) youths to find jobs. Macdonald’s, car factory.. I knew one day that someone with thorough training in all these tests might state what I have felt for a long time. “She would benefit from a vocational/practical educational curriculum.”

You know when someone makes you feel like you’re a bad parent? The first educational psychologist I saw brushed away all my worries (It’s bad guys. In some cognitive skills she’s actually become WORSE. She’s in the lowest of the low in many thinking ability type skills.) and said, “No! She will be fine, she’s fine! She will be able to be a lawyer.” Nope! With the reading challenges, memory etc? Nah! And that’s ok!

I love my girl and more than anything else, I feel the weight lifting. I know my angels. I know their weaknesses AND their strengths.

God will help us figure it out.

I opened the bathroom door and BOOM, there they were. The younger one had been yelling and yelling that I must come out. Stress is not good for a stressed bladder! And then there’d been silence so I got a huge fright when I opened the door and found them there!

I told them I was putting their photo online so people could see the children who when I expressed shock and fright at their presence, had their five year old spokesman saying, “But of course we were waiting! You were taking too long! You need to know I finished my food..so I’m waiting for my treat from you!”

Priorities ☺️