They said I should write a book

What an interesting morning and afternoon and day!

It actually began yesterday when my poor little boy was scared. I had sat down on the steps to put my shoes on and he came out to find me seated. What was so sad was how immediately he thought I was injured! My poor kiddies (and many others I’m sure) are assuming trouble even when I’m sitting down clearly holding one shoe in my hand and not complaining. He asked if I had fallen, and if I wanted help getting up.🥹Poor boy. I won’t scare him like that again!

Today, he looked stressed when I needed to use my new and upgraded cane! I had one but my non-speaker kept taking it and so I hid it so thoroughly that even I don’t recall where I put it. But, I’m glad I can’t find it! It was a normal cane and it kept sliding when I put my weight on it. This one doesn’t. It has four legs and is height adjustable – like my old one also was. It’s sooooo much more stable!

I am struggling with increased pain this week… I looked for a pain patch- box empty. So I used Deep Heat joint and muscle spray. What was the first thing my girl said 30 minutes after I sprayed? As soon as she woke up? She wanted to know, “ What’s the smell..? It’s coming from..from YOU?” Made it sound like I’d farted!

I told her what it was and knowing her smell sense IS sensitive, I asked if I should leave her to wake up fully and get dressed on her own. She refused. She said she liked the smell! It smells like something ‘good.’

It did reduce the burning pain for many hours before it slowly started creeping back in again now in the night m. I didn’t need to use my new and improved cane all day long.

Now, the heading is linked to this AS fight but first, small steps.

For the first time in my entire life, something Amarissa first noted and LOVED and kept marveling over, my girl came to me to seek comfort! She actually came to me for a hug because she was sad!

She was sad she didn’t have cake 😂Don’t ask me why she wanted cake. She had NEVER wanted cake before. She doesn’t eat birthday cake when it’s offered except for the times she stuck her teeth in a full cake or the time she screamed and fought us because we wouldn’t let her have an entire cake ! And it’s so random. Who wakes up and demands cake? Sometimes she wants potatoes! So..not something you just have lying around. But wow, we were blown away, my ten year old and I. She came to me, only me, wanting to be hugged! The same girl who – like her twin- backs up when you offer a hug so you hug them from behind and quickly springs out the hug!

Maybe she wanted cake because when we had cake, her biggest sister was home. It was Micaiah’s birthday on the 24th of last month and big sister went back to college a few days later.🤔Maybe she thought the cake would come with her sister.

And then another first. For years, she acted as if we didn’t exist as humans. She would walk on fingers and feet or someone lying down as if we were part of the floor. She would take what she wanted even from our hand as if our hand was just some inanimate object that didn’t belong to any human who might have wanted the object THEY WERE HOLDING! But today, she came and sat next to her twin, looked at the noodles her twin was NOT eating, looked at her twin(!!) and looked down at the noodles again and slowly and slightly, shifted the bowl towards herself and checked to see if her sister would complain!!

I was so excited!! And twin sister took one forkful and pushed the plate to her and handed her the fork🥰. She promptly grabbed it and went to sit on the sofa she had been sitting on before she spotted the leftover noodles.

She has been smiling for some months now. Just making eye contact and smiling! For the sake of it. This had died when she was 18 months old. And it’s back! She is happy playing alone and exploring the garden. And she is loving her occupational therapist.

It is good! And her sparkly twin sister who has been dying to have an actual twin is loving the new sister! She came again bubbling because her twin sat on her lap! She said she was soooo happy. 🥰🥰☺️☺️☺️

Now for the heading. The two who cut their locs have been hard to handle. If I leave their hair in an Afro- you know the story- overuse of ‘stolen’ products. If in wool, overdoing of tight hairstyles that will cause traction alopecia. But when I started their latched locks again, they hated that they had short hair. Ironic given it had grown from the length they’d cut it down to! So they kept fiddling with their hair. Putting it in elastics, plaiting some together which had led to the plaited ones starting to loc together! Baby locs do NOT want to be manipulated all the time!

My girl told me twice now, how shocked the OT was when she first saw her with cut hair and then wool. She asked why her locs were gone. And Ammy told her they’d cut their hair. OT said, “Poor mom!” as if she knows the pain and time taken to have strayed those thriving locs. When she heard that I was the one who had now installed baby locs, she said it again, “Poor mom!” No mother wants to redo things unnecessarily. No mother wants to waste time doing things to fix messes they didn’t create. But we do.

All mothers get tired. But some of us are ever fatigued, and constantly in pain even before we do anything. So yes, poor Mommy! It’s not like I don’t have leave from my teaching job! Poor mommy!🙃 And she doesn’t even know I have AS nor what that means for using stiff fingers to do hair and, the agony of standing or sitting and just normal child care for five hectic children, while helping the sixth one find out why one module wasn’t added to her timetable.

I forgot to give Twin A her ADHD meds. I told her to postpone school till I felt the meds had taken effect.

Can’t do school when a little one is doing this before even one line of ‘work’ is done!🫣

Can never say my life is boring!

I fear the night. The last time I bothered checking, I had had three hours and 47 minutes of sleep. I fear the night. No position is perfectly comfortable. My bladder is extremely weak so I wake up too often. Lie wrong, my throat closes up and wakes me up too.

I hate the day.

Days are stressful, painful and busy. Busy-ness makes the pain worse. And days are heartbreaking. I was talking to my two oldest girls when I noticed Amarissa putting the end of the hairbrush in her mouth. When she did it a second time, I told her to open her mouth. And there the piece of the comb handle was- in her mouth. Not only are random things chewed, random things are swallowed. I, who hates gum, even bought sugar free gum for her and warned her to throw it away. But as soon as the flavour is gone and she’s bored..back to chewing rubbish. Yes, I’ve tried giving her sensory chews. She loses them within two hours of having received them.

Nothing exciting in the video. Just showing one part of tomorrow’s school preparation as it happened at 8pm.

This matters because I was broken by then. So much pain. My ribs are so painful that there was a time I moved wrong and it felt as if my rib had been pulled off and away from my sternum. It felt like a clicking, graying and splitting of my rib. I did NOT want to be there setting out work, choosing if which subject and what to do for each one. (There are practice books for some of the modules) I was dragging. Wanted to cry. Just so alone and in extreme pain but couldn’t stop.

So what now with all that pain pulsing from neck, ribs, down to the soles of my feet? Praise Him in the storm.

I could find many good things yesterday despite the bad. What good is there today?

A paediatrician who is awesome!

Our regular paediatrician had suggested we move to a medicine called Vyvanse for Ammy if the increased dose of her ‘not working at all’ Amfexa for ADHD didn’t help me nor the behavioural optometrist who also complained that my girl can’t focus. Brings up random unrelated topics instead of thinking of her work, or exercise. I emailed three weeks ago asking to shift. I got a reply from an admin I don’t really trust. She has seemed very cold if you’re brown (there are other brown patients) but very effusive in her greeting when it’s pale people like her. The regular office manager though the same type as her, is very friendly and talkative. The not so nice one just confirmed that my thoughts were correct.

She replied asking what dose Ammy should be on. I replied stating that I had no idea, “but here is the dose of the current medication.” Dr had never discussed what dosage he’d put her on. She then replied that there’s a fill in doctor as the Paed is on leave. No word as to what action would be taken. Our normal paed isn’t proud. He tells me when he’s consulted with psychiatrist’s about my children. I assumed perhaps the silence was because this doctor didn’t know what to do and was consulting.

But then that was it. Silence!

I then sent another email request for a prescription for my other twin angel, Miss Talk a Lot. There was not a single sleep med in the house. For some odd reason, they’d all run out at the same time! Without those sedatives, none of us would sleep even three hours 52 minutes😩. I added the dosage and explained that it was meant to be on a previous prescription but Dr had forgotten to put it on. She phoned me and said I should wait until he’s back the following week. I told her there was no way I’d wait. I needed it that very day.

Then she irritated me. As if doing me a favour yet going to charge me over R250 for writing one prescription, she told me that the fill in doctor would do the sleep med, but I must wait for the other medicine as I must not have many queries and must wait till he’s is back. I hadn’t even brought up the other medicine. I just asked for the sleep med. Why add that command?

Well, the following week came and no reply to my initial request. I then emailed AGAIN on Tuesday last week, asking if the doctor was perhaps still on leave. No answer.

But, I had options. I contacted a different paediatrician (and her admin lady ) who is too far away for me to drive the children to. I emailed them on Thursday night last week asking if THAT paed could help us with the medication. People, she answered that very same NIGHT! I really appreciate it when a doctor has a way for us to reach them directly. No prejudiced or lazy people can get in the way. She replied so CHEERFULLY!! She said of course she would help and she really loves Vyvanse and has used it extensively and she knows it very well!

By Friday morning, as requested by me, they’d sent the prescription to me and to the pharmacy! By ten am, the new medicine had arrived. Not even 24 hours between my request and getting hold of the medicine! We will start low and see how she does this month.

That will be my purposeful praise for today. Gratitude for doctors who love their job, give patients direct access to them, and treat everyone with kindness and dignity.

(I emailed the first Paed over the weekend and told them they’d better not write a script now and charge us!)

The other bonus is that our Ammy who hides her medicine if I forget to check she has fully swallowed it, or tries to drop it down her sleeve like she did with her antidepressant, thinks the new med is “beautiful!” Maybe the beauty will encourage her to swallow and not hide in her stuffed toys like she did last week!

Help came fast. And I am grateful!

Another one? The way the children love nature and beauty. My little son took this photo with his tablet.

My talking five year old took these photos amongst many more.

I love their joy in innocent things. I hope it lasts forever! Like this afternoon during NY ‘calm down time.!’ I sent her to her twin’s room to give her her juice. My girl came out glowing! “Oh thank you! I feel so happy! I gave her a hug! I gave her a kiss! And then I gave her her juice! I’m so thankful you asked me to go to her!”

My biggest blessings and my most difficult challenges. The ones who love me but cause me the greatest worry. I don’t understand the whole, “You don’t know love until you have a child” thing. Maybe because my heart loved ALL children anyway, mine or not? And so I received joy just seeing them, teaching them even before I bore and adopted my own? Or maybe it’s just not African to feel that way. I don’t know. But what I do know is that I want to make them as happy as I want to make any kind adult in my life. They have as much value as someone middle aged like me. Their happiness is my happiness.

Random photo that I’ve read many autistics would resonate with. Lying on the floor brings pleasure and soothing. Cold hard tile? No problem. It brings peace. And it’s only the one under her twin. That bond I thought autism had severed has returned. She sits on her arm chair, lies beneath her feet, steals glances at her tablet as she works on some app… And she takes off her own shoes! Well done to her for having learnt that!

As for joyful parenting… I bought the foster care books so my teen girl could see how easy her life is. But Ammy is still finding them when I hide them, so her mind is still firmly on how she too has life easy. But not because of the kind of parent I am, compared to cruel parents or curl foster carers, but because I chose to become her mom.

Mommy, I am really thankful that you are my mom. You are my hero and will always be. I love you more than (I love) myself.

To Mommy…

🥹❤️

She asked me if it’s bad that she’s thankful every day that she was adopted and not left in foster care. I told her I’m glad, and I’m glad I make her happy. But it feels wrong to me, because she made my life full of laughter and she’s a blessing. Very tender.

‘Dear Mommy, I want you to remember that I really love you and pray for you. I want to thank you for adoptin me and for being so nice even when I am bad to you. It was good of you to adopt me and love me. I am just happy to be abil to call you

My

Mommy.’

I was so excited when these books arrived! I couldn’t wait to tell my children. And when evening came and I did, my sweet boy gave me the biggest hug and thanks ever! You’d think I’d sent them to Disney World. Just books. Every night before they sleep, they read. Somehow despite the visual processing disorders, they both love reading. And sometimes, though it’s hard going because the ADHD meds have worn off so Ammy really struggles to ‘see’ what she’s reading, she reads to her little sister. Just like she used to read to her brother.

I love it. I love it soooo much. Books were always my best friend.

And now I have different types of books coming between 4 days to 6 weeks from today! And I can’t wait!

I used to get most of the oldest two’s Cambridge textbooks from School Suppliers. For a while, I thought I’d follow the route I followed before, for Naynay, our nutty five year old. We did American Christian till the oldest two were 13 years old and then switched to Cambridge. But I was hooked by an email announcing a re-launch of their store under a new name. School textbooks and I are great friends. So I couldn’t stop myself. I went to go see what I could get. Mind you, I have my girl’s full Kindergarten curriculum already. But my excuse was that I want to have some sort of structure for the Afrikaans (which obviously, no American curriculum teaches), and when I saw they had reading books for English, I couldn’t resist.

See, we’ve finished our entire reading syllabus already, even though Grammar and Maths are only halfway done. Nalo loves reading, and she has sailed through her school work. If it wasn’t for the grammar portions – learning full stops, exclamation marks etc, we’d be done. Her spelling is at a higher level than she’s currently at in her school work. They expect her to only be starting to spelling ‘in’ and ‘on’ when my girl can spell ‘love, help, and Jesus’ already. So, I couldn’t stop at just ordering reading books, could I?

By the end of the order, I’d whittled it down to 17 books!😂🙈 And I can’t wait for my girl to try Key Stage 1 reading and see how she does with it. As well as computing, Geography… Things her current curriculum hasn’t looked at yet. I’m excited! I love teaching new things. I like planning and preparing school.

But I’m suffering more and more each day. The pain is indescribable. By the time I’ve taught one, I want to curl up in a ball and cry. But there’s still another to teach. I hate AS. I used to love teaching. I used to enjoy every aspect because the pain wasn’t as bad. I could focus only on the joy of learning..or figuring out how to modify a lesson.

But back to the joy of awaiting new books. I’ll be able to follow a set schedule for the children’s videos that I make for their Afrikaans. I need it! I laughed the other day. I’ve been adding the Afrikaans words for certain nouns I’m teaching but it apparently didn’t register. I had added an Afrikaans song from YouTube that had lyrics. My girl said, “These people are SO silly! They wrote fake words!”

See? I need the textbook stat!😂

And it was pure nostalgia. We used the Afrikaans Sonder Grense Books in towards the end of high school. Seeing them reminded me of how I failed my Coloured Uni friend. I didn’t speak Afrikaans using gamtaal? Mine was suiwer Afrikaans from the textbook and a white Afrikaner teacher. It was like King James English vs NIV. I remember the day we were looking to see if we’d been granted funding for our uni fees and our high school names were on the NSFAS list.

She saw my not Coloured nor Black high school and disapprovingly said, “No WONDER you talk Afrikaans like THAT.”

Ouch! 😂

Coloureds (Especially many Cape Coloureds)) have their own dialect, nasalized accent and own spelling. Sometimes it even looks more Dutch than Suiwer Afrikaans does. But today, I don’t even know if I even have the right accent at all anymore. None of my friends speak Afrikaans to me even when they ARE Afrikaans. But I have a way out of the spoken Afrikaans exam if we stick to Cambridge. If we do do Cambridge all the way up, Nalo will write the AS level Afrikaans exams but not the IGCSE one. Saves her struggling with her auditory processing disorder and the recorded speech you have to write answers about. I have no idea how the new SA curriculum examines Afrikaans.

Homeschooling is cool. I have taken Micaiah off the textbook grade 1 Maths curriculum and switched him to Ammy’s RightStart Math one. The one suitable for children who struggle. We will see how far we get. Before my girl knew I’d decided to move him, she’d gotten a bit jealous that her little brother was using a textbook like her five year old sister while she was doing what she calls ‘The Physical Maths’ (Hands on)

So she asked to try resume grade 1 official maths.

After 5 minutes, she changed her mind.Back to ‘The Physical Maths’ we went. I like that she got to see for herself that she has dyscalculia, instead of thinking I just held her back for no good reason. She sees now how difficult numbers are for her. Probably something she will forget again very soon. But for now, she knows we are working with her brain’s strengths instead of stressing her with the impossible (at the moment and very likely forever.)

Ok! I need to lie DOWN! School prep will be in the morning. Hectic lain, I feel nauseous. (Med side effects.) I swear part of my foot is numb. I’ve been feeling like that for at least two months now.

I REALLY need to go on ‘permanent disability leave’ 😩

Hoping your day was smile-filled despite the hard moments.

My girl said she wanted to “look fab for therapy!” So she changed into all pink and took pink toys for her occupational therapy session today. After I took some photos of her pink ensemble, she asked me, “What does fab mean?” 😆

The fights I have to deal with in this house! There’s a ‘My Mommy’ fight going on.

For a while now, Amarissa has been calling me MY Mommy. Heavy emphasis on MY. And I was ok with that. She’s at the age where she has fully understood what adoption is, and also, more. I’ll get to the ‘more’ soon. What she told me a few months ago, was that when talking about me to her siblings, she referred to me as “MY mommy” and her oldest sister took umbrage. “She’s not only your mommy, Ammy! She’s also ours.” I didn’t address it because Big Sis is off in Pretoria studying so she’s not here to argue.

But the argument resumed today. “Mommy, Mickey and Bk got very angry when I called you MY Mommy. They said you’re their mommy too. But that’s why I wrote a letter that said, ‘My Mommy.” (The one in which she implored me not to die.) I looked over at Micaiah. I know the underlying reason. But Micaiah is too intellectually damaged to understand it. And of course, I AM his mommy. I looked at his aggrieved face and told him that she doesn’t say ‘My Mommy Only and Nobody Else’s.’ Didn’t work. I told him he too can call me “MY Mommy.” Yeah, he did not accept that one either. I was thinking, “And why is my 20 year old son being so dramatic anyway? He’s meant to q Mickey’s anger!” Our part time tutor also tried to weigh in. I don’t know if he ever got fully convinced. And I don’t want to tell my angel to stop. She is internalizing a very important fact. Something she needs to do, specially given my other blog post about the teen who told me she always feared she’d make her (adoptive) parents stop loving her if she did something bad. Love seemed conditional to her even though logically she knew it wasn’t. So I left it and carried on with my mommy (See what I did there?) duties.

Everyone was dressed. Everyone medicated..except for Nalo who just needed her second medication. I’d set out her clothing after getting into her room and the first thing she told me was, “I wet the bed a LOT!! I made a BIG wee!” She asked for wipes and I gave them to her, asked her big brother to give her her antipsychotic, and after helping her disrobe her lower half, had left her to continue while I warmed up and dished out breakfast. When her twin decided it was time to go for a drive, I went back to her room to see how far she was.

Not far! Much like her sister, who needs lots of motivation and reminders and discussions of what exactly to take off and what to put on next, without me she’d done NOTHING! Her bottom half was still disrobed and her top half still the wet pyjama top and vest! I asked what she’d been doing all this time. “I’ve been singing!” she told me happily! So, I had to undress her and quickly get her dressed before her twin started screaming.

Amarissa walked in. She looked at me and said, “ Thank you for being my mommy.” Her five year old sister butted in, “She’s MY mommy too!” 😂🫣I hate being thanked for adopting. For me, it’s what everyone SHOULD be doing. And it’s as normal as MAKING a baby (for me) And none of my bio kids have thanked me for their being born. So I smiled at her. But she again said, “Thank you for being my mommy and taking me.” (Hate that last phrase.) “If you hadn’t been my mommy, I’d be very sad because I’d have nobody to call Mommy.”💔🥹

Man, my heart went to the many children who indeed are not adopted. And to how her arm was fractured in foster ‘care.’ Also, she’s been reading books by a foster mother and she’s finally realised that it wasn’t a straight “I’d be living with birth mom if not with my adoptive mom.” Birth mom has placed her in foster care. The choice was being left in foster care, or being adopted. And we CHOSE to adopt. I told her I loved her and our dear ADHD girl whose medicine I was holding in my hand had added in there somewhere, “But don’t worry, she’s my mommy and also your mommy.”😅 Then she told her her new slippers are beautiful. (Twin A is great at compliments.) I told my girl I’m glad I am her mommy too! When my girl says, “MY Mommy,” she means, “and if she wasn’t my mommy, I’d have none at all. She chose to make me happy.”

As for my boy, this is what I mean that he’d not understand the nuances of why I’m not stopping her from being so emphatic about me being HER mommy.

Violet is our helper.

My poor boy still has problems knowing what the different relations in a family are. He will frequently refer to me as his father’s mother, for example. He has known his birth mother’s name for over a year now. But he forgets it. He won’t understand the gratitude Ammy feels and what she means by my being her mommy as opposed to her having no mommy. So for now, I will keep reminding him to also call me HIS mommy. And I’ll go find my firstborn son and tell him what’s behind is sister’s emphasis. They’re all concrete thinkers, given they’re all autistic and my oldest daughter suspects she is too. (Oldest son diagnosed at age 17.) Hopefully that will keep the peace a bit. We have too many other arguments I have to referee! Also, I’ve explained the difference between sunbeam and son. I don’t know how else we can get THAT understanding into him.

And random one. The twins spent time together yesterday, during ‘quiet time.’ My non speaker enjoyed drawing with washable markers on her sheet. Her twin cheerfully told me when I walked into the room, “Look at her ART!”

Lovely. Juuuuuusst LOVELY! Bestselling art right there! 🙃I understand it though. She can’t ask for more paper and she’d used up the available page. Of COURSE she’d find different objects to draw on. Very logical.🙂

I did a parent meeting with the new OT I have chosen for our non-speaking twin. I chose her because she has DIR Floortime certification which none of my children’s other team of therapists have. DIR Floortime meets the autistic child where they are (Unlike the abusive ABA therapy) and tries to draw them out using what they are interested in. My girl is extremely all over the place so it doesn’t work well with her very limited attention span but also, I don’t have the physical strength to do it. One typical example is one I think I did share. Where you do something over and over, naming it and then stop and that makes them (hopefully) then ask for you to resume. So what I did was lift her up then bring her down. Each time saying, “Up. Down. Up. Down…” and then I waited. She tried to make my hands go round her to lift her but I didn’t do it. Then she tried to jump. And then finally she SAID, “Up!” And I obliged.

With my rheumatologist trying to eliminate ALL lifting in the house, I can’t exactly do that. So I’ll be sending my son to therapy and see how that goes. I asked for him to be allowed to set up a tripod so I see how things go and what I am able to incorporate, and what I can get our part time driver tutor au pair type guy to also do with her.

Look at this below! She is extremely scared of strangers. So none of us are expecting her to last a whole 30 minutes tomorrow but anyway…She usually takes me and pulls me to the car, then I tell her that “ Uncle will drive her.” But one day she pulled HIM. She even pulled him to the kitchen to hunt for something to eat!! As with every other ‘sign of progress’ she doesn’t carry on. And that’s what breaks me. She doesn’t keep it up. She said her twin’s name once in a while but she hasn’t said it lately at all. I just feel so helpless! But wow, the only people she pulls are myself and sometimes her siblings. This is the first adult (male) she has ever trusted enough to help her achieve her goals! She can tell he has a tender heart. And I like that he talks to her. Remember the domestic worker who didn’t last more than a day because she treated her like an inanimate object? Walking past her like she doesn’t exist? Walking behind her like she’s a cupboard? Ignoring her? They might not answer, but they feel.

During the meeting to plan therapy for her, I had to go through the entire history from pregnancy onwards. I had to recall how she used to laugh with us, laugh at us, play with us, counted on command, smiled at us, had started saying Mommy and then bam… It all went away. No more cuddles, no more Mommy, no more touch, no more laughing, no talking. The OT asked, “Oh my goodness. Wasn’t that very sad?? I can’t imagine the pain.”

I don’t WANT to go back to the sadness! I do miss my daughter. But we were there to talk about now, not for me to feel too deeply otherwise I’d have just collapsed into a ball of pain that I’d not be able to get myself out of. And I can’t afford to grieve. I have to be their super star. Single moms know that feeling. My husband will agree they need therapy, but I am the one who looks. I’m the one who tries to find affordable schools or just ANY therapeutic schools. I can’t afford to fall apart. To feel. To mourn any aspect that is broken. And I’m sure reading through the lines you can tell that nothing is going right at the moment in much of my life- thank God, not all of it.

After suffering to go up and down the stairs, my leg so weak that I had to hold onto the wall so as not to fall, she has offered to do the feedback session via Zoom or meet at a coffee shop. Aww! I’m thankful for the thought.

This is the other thing I’m thankful for. A teaching assistant and student and wife and worker who is taking time to help me. I don’t have firm plans for Twin B and her high school education. I don’t know if she will manage Cambridge. And I don’t like the American High School Diploma option. It’s just too complex with its many subjects that are so not related to anything we have done. and not every single institution of higher learning accepts it. So I’m seriously considering the South African curriculum. And with that, as a second language I could choose to teach isiXhosa or Afrikaans (Which I got A+ for in Matric), with Cambridge and us being in the Western Cape, the only SA second language they examine is Afrikaans.

By receiving these books, I get a glimpse and see what I can tailor for us. I just don’t know how independent homeschool parents like me make it work. All the people I’ve seen who are homeschooling using our national curriculum aren’t doing the work themselves, they’re using an online school. I still want the freedom to make up my timetable. Footprints on our Land is a SA history, geography, science curriculum for the young. But it’s not complete. I bought it for the history and science so the children learn our ‘social studies’ and not only the American stuff from our main curriculum.

This helps me. I’ve started teaching Afrikaans mainly because there are so many resources for it. Many books, YouTube videos, posters, tutors. And it’s a language I was familiar with. So it is relevant with both curricula! I’m thankful for people who take time and data to download resources for me.

I do this alone- the curriculum researching and picking. No sharing of thoughts, no comparing with a partner… This helps me feel not alone. I shared recently how at exactly 8pm, their dad would get into the bedroom where I’m marking exams (and if I’m not marking, I’m preparing lessons after a full and busy day), and turn the light off while I’m marking. Exam papers. For our children. It can’t get any much lonelier than that, this ‘homeschooling while sick’ journey.

So yes, every positive, every bit of partnership is extremely appreciated and so I come to the last thing I’ll mention. The ear I’ve bent regarding my oldest son and his education. I felt battered and bruised and alone. But now I have people who understood what I’d wanted and have seen the fruits of it not being agreed with, and support me with righteous indignation.

It takes a village. I am so thankful I have one.

And one last thing. The twin connection. Our non speaking girl, when she used to call anyone, would mostly say, “Naynay” her twin. Or, “It’s Naynay.” One thing she does lately, is sit close to Naynay. It’s new and sweet. She doesn’t talk to her, look at her, but she sits on the arm of the chair she’s on and enjoys being close to her. So different to when she couldn’t give two hoots where her twin was.

And so, the connection is mutual. My girls, who can write, have had a diary for over two weeks. The only entry in Naynay’s diary?

Her twin’s nickname. And she made sure I noticed – when I told her how sweet that was when I opened it and saw- that she put a diamond around the R and a heart for the o.

Love. I am thankful for love in its various manifestations.

Ankylosing spondylitis won straight out the bat when I got to the OT’s home where her practice room is. The room is up a steep set of steps. Each step extremely tall so you have to take a big step. That .. was.. torture … Just driving there and climbing up the stairs made my leg and pelvic area scream, “Are you serious!? Don’t you love us? Why are you torturing us?” I almost fell. My legs can’t take my full weight when shifting onto one at a time. They just wanted to collapse.

Then I sat with the stair pain. And the OTHER hip that had not complained about the stairs and driving decided it wanted in and kept interrupting my mind, “Haha, you have AS! You’ve got burning pain. Do you feel me burning you?” So I sat on one buttock. Didn’t help much, the leg was still bent.

The OT herself is lovely. Belinda von Wieligh. Her room is small, which is perfect for my girl who doesn’t really like wide open spaces. BUT, therapy (DIR floortime method) would NEED me and dad, or at worst, me, present the entire time, every session. Doing things while she watches and directs and if my girl goes to her, then I watch and take part and the best would be if she wanted us all to take part.

Nope.

My rheumatologist doesn’t even want me teaching and neither do I, as you know. I’m just teaching because I have no choice. I’ve implemented some DIR floortime tips and they are too difficult. Too heavy on my body. No way I could drive there, climb the steps and THEN have to do it all in one session. My rheumatologist herself would murder me! If she is so desperate that I stop reaching that she looks for schools and talks to teachers for my children, there’s no way she’d rejoice that I’m punishing my body.

Dad? He does NOT take directions kindly. So he’d be a bad client. And he said so himself. She said she’d tell you stuff via voice note after the session like, “ Oh, when she hit you, you didn’t realise she’d wanted the other blue thing when she pulled you to the red one.”

So, I’ll stick to the usual plan. Try fit in the method here and there and get her dad to do it. One was to do something they like and get them to communicate. So, I would pick her up and say “Up!” And then put her down and say, “Down!” And continue for a while then suddenly stop. And as expected, she then said, “Up!”

Below, she took the chairs from around the dining table and put them together and then pushed us all to fill every available chair. No leaving! No toilet! The girls eventually got bored so I started singing, “ If you’re happy and you know it” and she clapped and stamped her feet a few times. To which her twin shouted, “Oh. She’s making a nice show for us!” Whatever you want it to be! If you feel you’re at a concert, all good.🤣

Communication. I explained how she wants to speak. But speaking is hard. Floortime wants you to meet the child where they are then try get more out of them than what they currently give. I did that on Thursday without hurting myself as much as I would in an OT session (The rheumatologist seriously sat there and asked if there’s anything else I’m lifting after I promised her I do NOT bath any child. My back is bad. It scares me.) She wanted yoghurt. Pulled me to the fridge to open it. I labeled each item except for the yoghurt. My back was becoming sore and she needed me to get it as it was on a high shelf. She just kept silently pulling my hand up. I started getting scared she would end up screaming in sadness and frustration and almost, almost got the yoghurt for her. But then, as I was standing there and the fridge kept making its warning sound that the door had been open for too long, she finally said, “Yor-gut.” Whew! It was traumatic. I can’t do that over and over. Showing me is a valid form of communication. BUT there are things she can’t SHOW. And she only wants to talk. No pointing at pictures, no even looking at pictures. And that’s the sad thing. Her words mostly come out when she’s feeling strong emotion. So it HAD to build to a level where she was getting frustrated. I am hoping one day things are better. Less strain needed. It’s too hard on my Mommy Heart.

I also hope that one day she will understand what pain or sore or ouch or owie means so she can then gesture yes somehow. For now, we have to keep guessing why she’s upset, crying more, unhappy, restless …

I’m sad I physically can’t do OT. But I have the textbook. You can buy the videos and learn. They’re just expensive. But hey. Such is life. Never will everything move smoothly no matter who you are. This is just one of my rough and permanent patches.

Shabbat shalom. If you’re having a ‘Sabbath,’ enjoy the rest and peace in worship. I’m hiding in the toilet. 😅