They said I should write a book

This is a question I was asked by my children’s educational psychologist, and a friend we had supported and I still support through his parenting challenges when his wife alienated him from their children, preferring to go live a life of freedom with her drug addict family.

I had a parent intake meeting with the psychologist, in preparation for the third child to have an assessment- this time not because I found any learning disorder, but because the pediatrician had suggested she confirm the severity of her PDA and autism and for me, to convince him that my poor child is heavily under medicated. If she was in a school, she’d be in trouble all day, every day. She even stops a task she is busy with, to go off on a tangent. School with her, lasts three times longer than it should! By the time her ten year old sister comes to learn, my body is already extremely sore.

She had traced up to number five, then suddenly gathered three pencils and held them in order of height. Do NOT ask me why she thought to do that while reaching numbers! So, I took it as an opportunity to teach her comparatives and superlatives, and trappe van vergelyking. In English, “tall, taller, tallest,” and in Afrikaans, lang, langer, langste. Hey, she might as well have a headstart to the topic, right?

Anyway, as you know from my recent post, the psychologist was asking how I’m coping physically, and I told her that I was meant to have stopped teaching last year already. And she asked what support dad gives, what he does with the children to make the burden lighter and how involved he is.

Let’s just say, her answer, and my telling her that he doesn’t respond to her assessment reports I send him but instead sends them to his floozy in Sandton made her angry and worried. “If you die, then what will happen?? You’re the only one who knows the children!” He has no clue who does therapy where, who sees who when. And he refused to learn the vision therapy exercises, so no matter how sick I am, I’m still single parenting it. “Are you sure you’re not feeling suicidal? As a professional, knowing what you’re going through, I have to ask that.” And, “How is your church supporting you?”

I told her the only ‘church’ I have is a friend who lives far away and doesn’t have the luxury of just getting here when I want her. But she’s there. She’s listened, prayed, tried to act in a way that doesn’t encourage certain traits when she’s video calling or visiting… I told her she has wept for me over the years. The children, the spouse. She is my church. Worried about salvation and not about saving self ruined reputations. Caring about me and not protecting abusers. Hating breaking of principle and violation of vows. She is my church.

But she’s far away. And that’s ok. Because I have God. I know He sees me. Sees all my hard work. Knows I’m working, smiling, hugging, teaching, cooking through intense pain, but never losing my temper. He hears my conversations with the children, He watches me as I read His word and apply it to my life every morning. God knows the valleys I’ve traveled and the steep mountains I trudge along. He sees and He will reward it.

People talk about giving someone their flowers while they are alive. My children are the flowers I give to myself. They are proof of the thought, research, hard working, early rising, not sleeping that I go through to be the best Christian mother I can be.

The hugs are acknowledgment that I am loving and safe, gratitude for being an ear and a cuddle giver. They are my reward. A reward borne through great sacrifice. It reminds me of Isaiah’s prophecy of Christ. All the suffered by for an ungrateful world, but, “He shall see the travail of His soul and shall be satisfied!” Before the second coming, was the cross. And THAT satisfied Him because He knew there would be sheaves to harvest when He comes again. We are His reward. We are his crown of joy. We are His flowers if we live by every word and love Him more than life, money, fame or popularity.

What support do I have? None that is like my fired, my church who comes not just to talk, but to make life skewering had. BUT, I see my efforts in the children. The suffering is worth it. Not having anyone to share the highs with is bitter, but I’m thankful there ARE highs! Look at THIS! My girl rehearsed every new thing she learns so she doesn’t forget it. We are doing counting in tens so she did THIS in her spare time.

She is my joy. Her love for learning is unparalleled.

Her brother’s mistakes make us laugh. Mickey, then twin B and then oldest brother all went down with a horrible virus. Extremely sore throats, the usual nasal sinus blockages with noses streaming down, all round yuckiness and watery eyes and a cough for our non speaker. I told Mickey to keep a mask on when he’s near the girls. (I always wear a mask while they girls lose theirs ) but he was on his tablet and was in didn’t have it on but was instead swooping hands to hold it while playing. So I told him to put his mask (elastics) behind his ears.

My boy made us all laugh. His sister couldn’t believe him! She took a mask and copied him with great glee!

That’s what he did.

My ten year old said she, her sister and I should go to a hotel to escape the plague. But then she quickly said, “No way! You’d never survive me stuck in a hotel room! THEY should leave!”🤣

They are my jokesters, my flowers, my affirmation.

They are my reward while I wait for the white robes and crown, for the the healing and the peace that He promises to His long suffering ones.

No. I’m not suicidal. God holds me up and gives me moments of laughter to counteract the seriousness of our situation.

Like a six year know it all who says, “I give up!” when trying to teach her older brother, my telephone number.

Keep moving on even when moving on means accepting that pain is your portion.

I had to sort out the girls’ fight. We’re back in the danger zone of our tween’s hormones and she’s becoming extremely volatile. We received no reply from the neuropsychologist after the paed referral so I’m going to ask the paed if I’m meant to follow up. (This is now Thursday here in brackets. I did phone the office but there was no reply.) They didn’t even grace us with a, “We have an 18 month wait” reply like with rheumatologists when you’ve never seen them before.

So I have to play referee even more. Hang around them even more which means I have to be there with them more. Extra physical strain on me. But my non-verbal angel decided to need EXTRA care today. So I’m TIRED and in physical and emotional pain, so I tried to medicate everyone and retreated to my room after I fed them all.

Someone very close to me who I had tried to trust that they have the best plans for our family turned out to be a cruel liar, and that shook me this past Sabbath. Literally. I even got scared I’d die. My chest was so sore. It was like my heart would explode. And when I got an alert about it on my Apple Watch, I wasn’t surprised. My heartbeat while RESTING climbed up to worrying levels for ten minutes. As if I was racing fast. Then it remained 20 beats per minute faster than normal for maybe two days. Then ten beats faster than my norm. I can see how people die from broken hearts.

So, I had this broken heart and shock I’ve been nursing for some days now. I had been strong. No tears. Then boom, the pain and betrayal overwhelmed me. I retreated to my room to try get a breath, some silence. The children were fed, Naynay was reading a book, the others playing.

I sat down, leaned back to be as flat as possible on the bed, started talking to God asking how someone could be so callous and then the door opened. A VERY cheerful five year old who doesn’t talk came in. I painted a smile on my face. She looked around and left. I took my phone and was about to type about how heavy my heart was, and then the twin came in. Very, VERY happy twin, talking nineteen to the dozen about the book she was reading to her older brother, how it has many words, how she likes reading to her friends even through there lots of words in the book.. On and on she prattled while my heart sank. Not only did she not go back to the front like she usually does at this time of the evening, she even jumped onto the bed and sat on me. “Ok, now is NOT the time to think deeply. To let it all out, then.”

Then her older sister walked in looking angry and miserable. I wanted to cry now. I was FEELING miserable and instead of being able to be alone to express the heartsore feelings, I had to pretend even LONGER! My girl then not only needed me to pretend, but she needed me to absorb HER heartache.

Adoptee woes. I’ve seen these written. But I wasn’t expecting them at age 10. It was hard. My poor girl cried as she (not for the first time) stated that she doesn’t want to celebrate her birthday because it reminds her that she wasn’t with us when she was born.

You can’t fix that can you?😭

She said a LOT. I listened, hugged, dispensed a LOT of tissues, told her her feelings are valid, other adoptees have said the same thing – birthdays are difficult. One said that it’s because the day of her birthday is not something she experienced together with her mother, so it was not nice.

Like others do, I told her -like I did last time- that we could then celebrate her presence in our family on the anniversary of the day she entered our family. Then I asked, “So do you want us to act like your actual birthday just a normal day then?” Of course not, this is another issue the adults had. They do not want to celebrate. But if that desire is honoured, they feel sad that nobody is saying ‘happy birthday!’ Yep, it’s complex and they too don’t know what to say or do despite therapy. How much more a sad crying girl and a brokenhearted mother?

“I wish I hadn’t been born! I wish I’d been from YOU..” I seconded the second one. Told her that if she’d not been born, we’d have missed all her creativity and snuggles.

Conclusion? I told her I’d allow her to cry anytime she wanted, I don’t expect her to fake being happy like she says she does. And I’d also say or do SOMETHING on her birthday.

By this point, my body was screaming, and so I rubbed my painful calf, rubbed my terribly sore ribs and that made her burst into a fresh bout of tears. “..and why are you in PAIN!?”

Another one I can’t solve!

It didn’t end there.

Guys, teaching an AuDHDer with PDA is an exercise in patience. They have their own timeline, they ADD extra tasks they think should be done during the lesson, they dawdle, they get distracted. “Yes, I’ll trace the capital R. Did you know that I like lions? Look at my bag! Look inside!”

It takes so much longer to teach a child with such severe symptoms. And then she burst into tears too. That was this morning.

“I’m sad!” She told me. I didn’t know where that came from. Was her hayfever really bothering her? I asked why she was sad. She said she was sad because my back and my legs are in pain and it makes her sad.

I hadn’t even indicated any pain! I was just teaching! Though I do rest on the bed when they’re doing independent tasks, I don’t tell them why I’m lying down. “What can’t you be better!?” And I hadn’t even lain down yet. But she cried and cried. I couldn’t even promise her I’ll be fine. We know I won’t be. We know it’s incurable and gets worse.

Another one I can’t fix!

I’ve felt so helpless this week. I can’t fix the person who is so broken that they go and destroy other people’s souls too, destroy me and take money meant for my children and give it to a girlfriend.

I can’t fix my body.

And I can’t fix my children’s hearts.

So, it was a bad Wednesday AND a sad Thursday.

But. I will rise. I haven’t had that teary moment again. Granted, it’s only a day I’ve been strong in my God. Last time this happened, I wanted to die. I pictured am driving at high speed and smashing into a pillar that holds the bridge or overpass to. But then I wondered if I’d have the courage to continue with the speed or be so scared at the last minute that I’d end up only permanently maiming myself.

The last time I found out I was the only building this home while the other was building another one’s ego, I thought God had forsaken me, that I had sinned a terrible sin that I couldn’t recall and so couldn’t repent from. I had prayed every day, every chore, lovingly cooking and ironing, serving, overlooking how it was mostly me doing the parenting. And instead of growth, there was backsliding.

This time, it’s different. My worth isn’t found in how truthful, faithful and faith-filled another human is. I’ve read God’s word enough to know that I’ve served Him with all my heart and that I deserve honesty and integrity just like I give it despite.

No tears yet. Leopards truly don’t change their spots. Not when they are happy being spotty.

The rest of us Christians? We shall walk the narrow way, ask Christ to make us spotless and pure.

And we shall rise.

I came across this now on YouTube. I was looking for a song I like but it popped up.

It IS indeed painful to ignore a person right in your face who talks to your children but doesn’t talk to you. Someone who tells you YOU should have stopped being hurt when they hurt you and so there’s something wrong with YOU for not healing from a wound they never apologised for causing, for being upset that you have a heart they broke and didn’t do anything to fix.

This video HERE… Why didn’t we have this information when we were still young? I’d have known what red flags to keep an eye out for, I’ve only learnt this in the past year!

1. I’ve even asked, “Why can’t you just listen without turning it to YOU?” Eg. Earlier this year, “My neck is really getting sore at night, it’s harder to sleep. I need a flatter pillow.” Expectation- “AS is cruel,” or “Shame man, I hope we find one. “Reality? “I also need a more comfortable pillow. I’m a CIO. CIOs deserve to sleep comfortably.”
2. Apology? “Well, I’m sorry he feels hurt but seriously, why didn’t he hear it!?”
3. Dim your light and compete? My first ever blog had so many people thankful for it, or just interested in my culture, autism moms grateful. Even this very week, he said it was “bad.” When I got praise for making wonderful bibs and burpers which I was selling, he told me to stop selling because it makes him look like he’s not a good enough provider. Any positive comment from YouTube watcher? Disinterest. But I must read 47 pages of his work assessing him.
4. Subtle control that shuts you up? Sarcastic put downs that hurt and then when you state it hurts, they say they didn’t mean it, I’m just too sensitive…I then asked him to pray before speaking. Enforcing the boundary of politeness and kindness. Nope. Then even when you need a quick answer, the sarcasm, “Well, you said I must pray before I answer. So I’m praying!” Punishment.
5. This one hurts. I literally break my body for our family. I work hard every single day. I teach and prepare, choose curricula, medicate and soothe. But that is never seen, never appreciated. The same man who preached that men must say something positive and affirming to their wives every single day hasn’t said anything affirming to me in ages. He told his woman in Joburg that he appreciated the photos she sent of herself though. This is why he never spoke his proposal. He’d need to ask me for permission to marry me. But he’s too superior. So he wrote it down and sat there… No need to look into my eyes and tell me he loves me. Just write it down.
6. Me expressing how I feel unseen. Begging for help and appreciation because I feel alone. This year, he handed me a package and said I could open it. It was gifts from females at his workplace thanking him for going the extra mile for them, for checking that they were ok. THAT is the strongest example of using my vulnerability to hurt me. “See? I’m seen and you’re not. I get gifts while I breadcrumb you.” It REALLY hurt and I don’t know what else it was except a method to hurt me. NO loving spouse will hand a gift they know is for them from someone from the opposite gender and tell them, “Here’s something for you.” And it’s actually not. I bet he’s never done that to the woman he’s given thousands of rands to. I think that’s when the shell around my heart grew stronger. You don’t love someone you purposely hurt. I am not loved. And though it hurts so much, I have to accept it to survive.
7. Not choosing growth. Instead, descending, regressing. Not willing to humbly reach a higher state. Not willing to admit being wrong. Instead I’d get, “ Well, YOU were wrong the other day too. I don’t remember but you also aren’t perfect.” Or, classic one I tell. We have two supermarkets called Shoprite and Checkers. They are both owned by Shoprite but are two separate shops. Our nearest mall had a Checkers for years, then they started renovating. As they rebuilt, they added a Shoprite sign on the outside of be building and I commented, “So there will be Shoprite here AND Checkers!? Unusual!” The dry sarcastic, “ You DO know Shoprite owns Checkers, right? It’s just there because they own it. I replied, “ I KNOW Shoprite runs them both, no way a mall would have the supermarket sign for it. They will open up a Shoprite.” He told me, “Remember, I work in retail. There’s no way they’d put both stores in one mall.” And I thought, “I may not work in retail. But I have common sense. I’ll wait till the mall is done and then take a photo and PROVE both shops are there.” And of course, I was right. But unlike other times where I kept quiet because it’s not like he’d ever apologise for talking to me like I’m an imbecile, I took the photos and sent a message telling him how we lay men can also reason.

She starts setting boundaries, he says she’s changing. I went to a relative’s funeral where no relative greeted me except for one. I went to my mother’s funeral where again, it was only the one, and my cousin who I had asked to preach.

Now, the person who cursed my children is dead and he says I’m not Christian for wanting to expose myself to pain like that. I spoke to my aunt the day I was burying my mother, she never replied, why would I go where I’m not NEEDED? But that boundary has resulted in me being called bitter and unchristian. A man who has a secret relationship with a woman while married, gives her money, admires her photos, looks at her work info that should be confidential – how much she paid people as incentives!!-is NOT qualified to decide what’s Christian or not. He himself doesn’t know, going to church while having this extramarital relationship.

All these and MANY more, helped shield me. Maybe one day I’ll cry. It hasn’t happened yet and I hope I never DO cry over a man who proposed to me but never wanted to grow as a husband.

I took this photo to marvel at how finally, our girl is at ease with him. As you surely know by now, he comes half days Mondays to Thursdays to do the driving for our little AuDHD angel, and them, and the playground and vision therapy appointments and at home, for teaching Ammy and Mickey, much of Mickey’s school subjects, doing vision therapy exercises and finding anything to help Micaiah learn to be more coordinated.

She pulls him to the car, sits close. I’m glad she’s relaxed.

But this is not about her. It’s about my ten year old, Amarissa. She told me this morning that she misses him. Yesterday and today he couldn’t get public transport to come to work and his car was being repaired so he didn’t come in. I told her, I’m sad she misses him. And she added, “Because Bk is too friendly when he teaches Maths.” I asked her for clarification. Her brother is too playful? She explained that when she makes mistakes, he’s not strict like a proper teacher, he just says, “Well… It could be… But…” instead of just saying, “Oh that’s wrong try again.” Now that is a novel complaint!

I thought about it, and told her I believed he had trauma. When they were struggling with the more difficult level of Maths for their IGCSEs, their dad would tell me that he doesn’t get why they’d want to move to the less rigorous Maths. Now bear in mind, for decades, I’d heard from their dad how he was in the A stream at school, the clever stream, and did so well with his subjects and was just soooo clever. (Though when I came to his O level and A level certificates, the marks did not reflect the reality I’d been told.) So given no video, tutor could help them, I asked him to help the children seeing as he did Maths in A levels.

It was bad. “But how can you NOT understand this question? What’s wrong with you? Aren’t you thinking? Why is this difficult? Anyone can do this? This is easy!” I told them to stop and we would do our less rigorous Maths for which they got good marks for but translated to a C on their certificates. Good enough for every course they ever considered.

So, I told my dear ten year old that I believe her big brother was over compensating for how their dad made them feel when he made them feel like they were stupid.

And that, is why she misses him. Because he doesn’t let her get away with being wrong by acting like a correction is not indeed, a correction.😅

I’m so proud of her!

We brought our oldest back because he was messing around a LOT instead of studying. Which meant, my girl was left alone in a house in a complex! (Gauteng house prices are so much better than Cape Town!) People told me she should get a housemate or two but I’ve been there before. Strangers don’t always treat your house well. We once rented our home out when their dad got a job in Stellenbosch. She seemed a decent woman (with two decent school aged sons) who was leaving her cheating husband. But then she decided to reconcile. (I hope she doesn’t regret that now. This was in 2013) and left and went back to him. And oh my word, left a MESS! It’s like they’d poured cereal, crisp crumbs, out into the cupboards, they’d broken even toilet paper holders, empty boxes, mess, mess and part of a bathroom mirror also broken. That was reason number 1.

Secondly, the person would be an adult. You can’t stop adults from doing adult things. Unless you are brave enough to write, “No loud intercourse allowed” – something I suffered from with one of the girls in my residence-day and night. And that was my major concern. What if the person makes noise or is a disturbance?

But thirdly, my girl did not want anyone else anyway. So, she has been living ALONE! That’s actually crazy for me. Alone in a totally different province. She asks me about coolant and things like that for the car, and that brings us to the car.

She is alone and has access to a car! When I was in high school, I believe I shared before that there were maybe three girls that had their ‘own’ cars. It was soooo cool. And in university, there were maybe five out of 24 speech therapy and audiology students who had cars. None were African origin. Thankfully they somehow liked me so I always got a lift to our hospital practicals.

The first car we got was in the UK. Cars were very easy to get! We worked in a warehouse setting but could afford a lovely one bed flat and a not too old car and a proper diet. On warehouse wages! Never possible in SA. And when we came back, my mother got us our first SA car because she felt it was beneath us to be using public transport while job hunting. It was old but working ok minus lights we had to keep fixing.

Our first REAL African car was probably two years after marriage so I was probably 25. No, I think it was three years so I was 26. But I always felt sad that I didn’t have a car to give OTHERS lifts when I was a student.

And now here we are. My girl is friends with a bunch of girls who also live alone, also mostly in gated secure complexes. It’s so foreign to me! I’m sure it’s the norm for many others. But not for me! When I was in first year, everyone either rented student accommodation or lived in university res or lived with their parents. None in my class lived alone in a private house.

I’m proud of my shy, anxious girl. She’d been nervous that people would stare at her as she washed the car. But she still did it. And shared the fruits of her labour with me.🥰❤️

Here’s to learning how to work hard, take good care of your possessions, and pour coolant with men driving slowly past who act shocked you have your bonnet open and are doing something in the engine YOURSELF.😎

This level of independence will really help set her up when she has a job wherever in the country and is living..alone. She’s done it! This was a girl who needed the light on in her bedroom then negotiated to it being on in the corridor even into her teens sometimes keeping her lamp on all night, she was that scared of the dark and there were lots of us at home. I am truly proud of her for overcoming her anxieties and fears. I hope this last set of exams this year will bring great results and that her spirituality grows.❤️🙏🏾

Proud mom. She’d worked hard to help me when she was on holiday and she’s working hard away too.

I’ve been having some deep conversations with my girl’s birth sister. She’s the same age as my firstborn but wiser and more mature. I also bet that caring for your mother and sister and own little one will make you grow up quickly.🥹 I was telling her about how manipulative and sneaky our girl can be. The shoplifting, the constantly telling on a sibling when actually, SHE was either the mastermind between them all, or she did it herself. The copying of the little girl who had encephalitis, leading her to being admitted to hospital and getting tested for no reason because she was faking the hallucinations and headaches she claimed to be having.

Now we have the cutting. Also copied. But it gives her extra attention. And as her big sister noted, she already gets MORE THAN ENOUGH love, attention and way more “ No beating” like she’d get in a typical Black family. So why the need for extra attention? She does it with the cutting, a true self harmer doesn’t tell everyone in the family what they’ve been doing! A true cutter doesn’t proudly show their wounds.

And so, when we met with the paediatrician, we had a long talk about how she needs a neuropsychologist to get a proper assessment as her manipulative behaviour is not normal. And I remember a friend and I commenting on how young she was to be thinking so sneakily. She’s older and it’s worse.

Just now, we were discussing the Alphablocks episode I’d downloaded for them which they were watching. She was telling us that at first, she hated the whole concept and didn’t understand. She said she hated it so much what she came to me and told me that they say ‘bad’ words so that I don’t download any more videos.

That is sad! It has helped Twin A with the already great spelling and why not just not watch it then, instead of making it so none of the others could watch? How did she think that up?

Why?

I am so glad I didn’t believe her after a while and made time to watch for myself. But it’s things you can never get evidence of. Or you have to take someone else’s word. You don’t automatically jump to, “She is lying.”

My girl is dangerous. And she’s only ten years old. What will she plot and plan as she gets older?

Yet, as her sister and I said, she is so sweet too! She has redeeming qualities in abundance! But the other actions just make your heart sink. Telling her to throw her pull up away and she innocently says she did, only for her oldest sister to find it in their wardrobe. Or Vi finds it under the bed.

After watching Ms Faith yesterday, today after breakfast, she decided to copy what she saw. Slice of apple with peanut butter to help grapes stick to it. “A Mickey healthy snack” as Twin A exclaimed.

We won’t talk about the mess. We will talk about how she recalled and performed something POSITIVE that she watched.

I wish our life had very little of the behaviours that challenge, and much, MUCH more of this.

One can only hope and pray.🙏🏾

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!”