PART II: Mr N

Last I blogged in 2016, Mr N was in high school and doing very well academically, socially and health wise. After grade 7, we decided to move him not to a public high-school, but a private one. It's a very unique school that tutors in our home-language, but offered the Cambridge exams. He enjoyed high school a lot, did very very well, had so much fun and made life-long friends.

Unfortunately, around age 15-16, he started to notice absent seizures during class. It was confirmed as such via an EEG (later on only, at first not), and since then he has been back on his medication. So it was just a nice 4-year break for him, before having to go back on the meds. Still, we cannot complain. The medication controls it well, and he functions well on it. And relatively speaking, he's on low doses comparing to others with his particular type of epilepsy. (Unfortunately we had to up his doses to more medium-levels. It has worked well to contain breakthrough seizures, and maybe we can get him free enough to be able to get a driver's license and still be a safe driver.)

He completed his IGCSE exams age 16, and thereafter also his A- and AS-level exams through Cambridge (UK) when he was 18. We were so proud of him.

After school he entered into an on-the-job training program based on his excellent A-level Computer Science knowledge. Once he completed the year, they offered him full-time employment as a programmer (IT software developer). Only those living in our country would know how exceptionally rare it is to get a job directly out of matric. Let alone precisely what you want, and at a good salary. It was a true gift from God.

He has started his degree part time at a private university as well. So not only has he a full-time job in exactly what he always wanted to do, he is also completing his degree in it, via online classes on weekends, and so far it's going very well. Very good marks and he's enjoying it, and coping well with a full-time job and studying. As he is saving his money for studies, he still lodges with us.

I'll continue with Boeboe's update here.

PART III: Boeboe

 

Where to begin. When we moved Mr N, we took him to the open day for his new high school. While we were there, we noticed an advertisement for the open day for their primary school as well. So we took the younger kids on the spur of the moment, and they absolutely loved, loved, loved it. And we realised. God opened a door for us, so we walked through it.

So Boeboe started her grade 6 year in a new, private Afrikaans school. It was awesome. Precisely what she needed. Small intimate classes, less stress, less homework, less pressure, teachers who had the time to care. Age 13 we moved her over to the high school which were on the same grounds, where her brother was also attending. So almost no adjustment needed, except that the handbooks were now in English (though classes in Afrikaans) due to the Cambridge curriculum they follow.

The first year was wonderful. She did very well. Unfortunately, during the 2^nd term of her 2^nd year, in April, a new girl started. Within 3 months, Boeboe turned from a happy child to a suicidal, unhappy, angry person. We found out the new girl was bullying Boeboe. First she pushed a wedge between Boeboe and her best friend, who then became friends with the new girl. Then the new girl bullied Boeboe with words, then emotionally, socially and in front of the boys in the class, of course, all of this when the teachers were not around. Lastly, in August, it became physical. Shoving, pushing, shouldering her out of the way.

Until that point, the school did absolutely nothing, due to the cold war between me and the headmaster at that point, which I'll discuss later. I begged for help. I pleaded. I even cried. My husband begged, asked and pleaded. Promises were made, but absolutely nothing was done.

The psychiatrist saw Boeboe beginning of that September in 2018, for her regular check-up. She called me in afterwards and told me in no uncertain terms, to take Boeboe out immediately. Not even wait a day or a week or a month. Not even making other plans. Take her out NOW, today, were her words. Or suffer the consequences. Which would be dire. She made sure I only left when I realised the imminent danger my child was in, if I didn't act and protect her immediately. I would forever be grateful to this doctor.

We went home. I was shell shocked, helpless, frustrated, sad, alone. Me and her dad discussed it later the day, and told Boeboe that she can't go back to school again. Not ever. Not even one day. She was happy about it! Relieved. She knew what the psychiatrist said, but it was still dependant on our decision as parents. But she was just tremendously relieved. I'm forever grateful that the psychiatrist noticed, realised what's needed, and made sure I perfectly understood. We had no choice. But even more grateful that Boeboe already realised it too.

She only asked to be able to go back and explain herself to the friends she had there, and say goodbye, on the Friday of that week. Under my supervision, as a civilian, not attending school. Just explaining, hug everyone, thank her teachers, and say her goodbyes. I agreed. It helped to give her closure.

We explained to the school, without accusations, that Boeboe's doctor told us to homeschool her immediately. We didn't point fingers, but they knew. They knew.

During one of the previous conversation I had about the bullying, it was blamed on Boeboe's autism by the headmaster. I was shocked to my core that day as well. They protected the bully and blamed the victim for a condition she couldn't help. I told the headmaster that I was honest before entering Boeboe into the high school. I never hid her autism or any of her important diagnosed conditions. I told them everything they needed to know and asked them pertinently are they sure they can handle it? I was assured over and over that it would NOT be a problem for them. 

And then. Boeboe was blamed. Her autism was blamed. That day, I lost it. I cried. Desperately so in front of the headmaster and the owner of the school. But on the day we took her out of the school, I lifted my head. The psychiatrist showed me the truth. My child was the victim, as we knew. And now, the school also knew. They failed her.

What saddens me to this day, is that nothing was done about the new girl. She was still there many years later. Boeboe's friend who was later the new girl's friend, also left the school a few months later. I can only guess and wonder at the why. A few others also left the class. So was that worth it to the school? Not only did they loose several students, but the bully was never given the help, guidance, support and limits that she clearly desperately needed. A bully that is taken to task and then helped, can turn things around. But if left in that state of darkness, what becomes of them? As a teacher, this saddens and horrifies me so much. As a mother, I feel so very very sorry for that lost teenager. There was still a chance for her, if the school only took it seriously. My child was helped. The others that left probably found their way, but what happened to her, the bully?

Maybe I should just explain a little bit, because it sounds very strange, doesn't it? How this could've happened? You'd need to have met the new girl, to understand. She was relatively pretty, and blond. But it was her personality. She was an extrovert, and reminded one of sunshine when you saw her. Always smiling, always energetic. Warm. And a force to be reckon with. Always extremely helpful. She would go to every teacher and help them in small, little ways. She was very talkative, and always in an upbeat, optimistic, happy and energetic way. Very fast. She had good manners and was very intelligent, so she quickly received good marks with all the teachers.

So the teachers absolutely adored her! Such a lively, happy, helpful, kind and sweet child, they would say. Because that was exactly the image she portrayed whenever a teacher was around. The older kids, like Mr N and his class, saw right through her, and they steered clear from her. Which I found extremely interesting. But the younger kids looked up to her, so she was popular amongst them. And extremely liked by almost all the teachers. I hope this help people to understand, in some way at least, how the shy, quiet, introverted autistic child who couldn't clearly communicate was blamed, and this bully given a free pass for what she did. When the teachers do not SEE the bullying, they sometimes struggle to believe it. I find it sad. So very very sad.

Boeboe was doing so badly those first weeks after everything, that I basically told her to just rest. The rest of that year.... she just rested. She slept late, read, and spent hours with her new kitten, to help her cope with the trauma, loneliness and rejection. It took her about 4-5 months to recover from the shock and heartache and sadness of it all. To accept what couldn't be changed any more. To adjust to all the losses. And to refocus on what laid ahead of her. Her future.

During those 6 months, a lot happened with and to Monkeyman, Peanut and me as well, so in the end, I settled on homeschooling the youngest 3 children from 2019.

The first year, 2019, I unschooled all 3 of them. Due to my stint as a teacher myself, which I'll get into later, I now realised the extend of the horrors happening in school. The worst is in public schools, but private schools clearly were not exempt. I was shocked many, many times as a new teacher, to realise what's going on. With teaching. With education. With the curriculum. With the propaganda. With the workload. With the agenda. With the politics. Etc. Parents actually have NO idea what's truly happening. It's sad. I got to experience it all first hand and I was horrified. So when things pushed us all into the homeschooling direction, I was ready. I had the fortitude, the understanding, the knowledge, the experience, and now, the courage.

My 3 youngest were all overworked, stressed and unhappy. That was one of the reasons I went the “unschooling” route for 1 year. We focussed on certain areas and had an informal routine. They slept a lot. Played outside and with each other a LOT. They relearned how to socialise in a well-mannered, moral and fair way. I taught them integrity. Courage. The ways of our Lord. We had formal Bible lessons and group Bible study. I retaught them their history of their country and their people. Something I did not realise how much was lost in the propaganda of the day. I read old literature, poems and historical stories to them.

I taught them again how to enjoy books and reading. How to stop hating exams and tests and studying. How to find information for themselves using the computer. How to love maths again and not fear it. How the world is still a beautiful place, if you look for the peace and love and happiness in it. How one can forgive bullies and unfairness and move on. How one can make new friends in the place of those lost. How one can enjoy spending time with one's siblings. It was a healing year for us. Necessary. And it worked better than I could believe it myself.

During 2020 we started a more focussed routine. A more standardised curriculum. This is also the year of the pandemic and lockdowns. I was immensely grateful to God for pushing us in this homeschooling direction before all of that. With Monkeyman's heart condition, home was the safest place for him. And as a teacher, I would've hated the whole masking thing. 

Boeboe finalised most of her senior education work during 2020, and wrote her final schooling exams in February 2021. With her, we decided to go the American route, since she did not need the vigorous British qualification for what she wanted to do, like her brother did. She studied hard, through an online school, and achieved amazing marks in all her subjects. Passing first time with flying colours. We were all so very, very proud of her! She was finished with school. She had a matric certificate in her hand. It felt so surreal. And she achieved it a whole 9 months BEFORE the rest of her peer group did! She was only 17 and done with school in February already of her matric year. What an achievement! For a child they couldn't assure me would ever even be able to finish school, let alone excel.

The rest of 2021 I employed her as a paid assistant to help with her siblings' schooling and taking her little sister to the park regularly for socialisation with adult supervision. And in 2022, this year, Boeboe started as a first year student at a local private college, in graphic design. It suits her like a glove! She has learned so much and enjoyed every second so far. She achieves excellent marks and passed all 6 her subjects in June with flying colours, despite their high standards and difficulty level.

So how is it going with all her issues, which were the focus of this blog for so many, many years? Good. She is back on the medication that she was on as a little girl, and it's working well. She still have all the gain of function she got back after the untethering operation. It kept on improving for a few years after the surgery. I think she stabilised around 2015-2016, which was about 4-5 years after the operation, when she was about 12-13 years old. Until then, she just steadily continued to improve in minute little steps.

Though she still has some permanent lost function, unfortunately. She's not how she would've been if she never had the tethered cord. But she accepts that and lives well with whatever hand she was dealt. She has not had any regression at all, and the difference is incomparable from what she had before to after the operation. It was so so so so worth it. It gave her back her life. She is now almost like every other young adult. She has matured. All the areas she needed to catch up on, has been caught up.

She still have to compensate for her autism and everything that goes with that. Unfortunately there's no operation that helps for any of it. But she accepts who she is, with all her limitations and all her strengths. She does not always see what we see when we look at her. After the first 10 hard years of her life, the past almost 10 was such a change. Despite the “hiccup” in Grade 9 with the bully.

She grew from an angry, demanding, special-needs, difficult child into a beautifully controlled, compassionate, kind, sweet, generous, empathic mature woman. We are in awe. Of who she is, what she overcame, what she's achieving, and who she's clearly going to be. A human being that's worth knowing and loving, who gives more than she takes, who loves generously and compassionately, who's passionate and stubborn and fiery like her mom, but much kinder, sweeter, more innocent and faithful. Loyal to a t, exceptionally hard working and conscientious and even a bit ambitious. She doesn't take no for an answer if it doesn't make sense to her. 

She's methodical and think things through in a way I couldn't do at that age. It's as if she took everything bad in her life, and channelled it into her future as positives. It astounds us every day and again, me and her dad can just look at each other, shaking our heads and think.... how? But this time, in awe and in wonder. We have boundless respect and love for this strong, amazing, wonderful woman she has turned into. And simply cannot believe this is our daughter. That fiery, strong-willed, exceptional little girl with the wild curly hair and big dark eyes is now this beautiful grown-up person. We don't deserve her. And we are truly grateful that she has overcome so much in her life, and made it a strength. Even if she doesn't see or feel it. We can. It still amazes me when I think back over the past 20 years. Just absolutely astonishing, how far we all came.

I'll continue with Monkeyman's story here.

PART IV: Monkeyman

So the last blog entry I made in 2016, was basically about Monkeyman's final diagnoses. SSS. Sick sinus syndrome. The enlarged adenoids that was only found and removed age 5, caused the heart to enlarge, as well as pulmonary hypertension. With time, the heart and pulmonary arteries shrank back to almost normal size, but it all left his heart damaged. Particularly the sinus node. This causes bouts of tachy- and bradychardia all throughout every day (heart beating way too fast and dangerously slow). This causes the severe tiredness and the sudden paleness that was witnessed by several doctors. There's no medication that can help, since medication either reduces tachychardia or fasten the heart rate. Thus, in his case, it would be useless or even dangerous, as the medication cannot distinguish when it needs to slow down the heart or cause it to speed up. Obviously, giving a too fast heart meds that cause it to speed up, is extremely irresponsible, and vice versa.

So no medication, no operation, nothing really can help him at this point..The only “cure” is a pacemaker, which they want to stave off until it's absolutely necessary to keep him alive, since it comes with many drawbacks, especially for a child. It can even worsen his condition and cut his life thus shorter quicker. They just don't know, since this condition almost exclusively only happens in people age 70+. Not young children. So data is scarce and they tend to err on the cautious side.

So our only solution ended up being to keep Monkeyman comfortable until he worsens. When he was grade 1, he started at the new private school we moved his siblings to. He absolutely LOVED it. He adored his teachers, the new curriculum, the smaller school and made lots of friends.

Unfortunately, by grade 3, he was worsening slightly. I was scared about grade 4, as it's a taxing year in our country, with exams and added workload. His grade 3 teacher told me how he truly suffered in school. Turning pale, having to lie down regularly, not coping with the work, etc. His intelligence and will carried him through, but both me and she knew it was just a question of time. She was exceptionally good. A good person, good mother and a good teacher. And even though she had terrible things happening in her personal life, she still was always there for my son, kept an eye on him, and supported him. But what I appreciated most about her, was her honesty. She didn't minimise it, and told us straight out that this child will not complete his formal schooling. He just cannot physically do it. She supported him (and me!) throughout the year, to preserve his energy but still get the best education he could for that year.

Unfortunately, during grade 4, it became clear. He couldn't keep up any longer. It became so bad that we had to end all after school activities. We did the bare minimum of homework, etc. Still, it was too much. He turned into a zombie. Waking up tired. Coming home tired. Lying down all day and evening. Then rinse and repeat. That's not life.

This all happened the same year that from April, Boeboe was bullied and from September, ended up staying at home. Thus I realised.... again, God is showing us the way. I fought it as long as I could, but it was clear what I had to do. So I pulled Monkeyman from school too. We let him finish the year though, which ended beginning December, and from 2019, he too homeschooled.

Like I mentioned, we first unschooled. I let his body rest and recover for a whole year, doing minimal formal schooling. Like I explained under Boeboe's recap. This changed him from a barely functioning little boy into an almost-normal boy. He regained his mischievous nature that got lost along the way. He was smiling again. Asking to play with a ball outside or cops and robbers with his little sister. He was interested again in different hobbies and didn't complain if we had to go somewhere, like visiting family. He enjoyed it again. Taking him out was the right decision, that was very very clear. Even though he did miss his friends tremendously, as well as his teachers.

During 2020 and 2021, we caught up and finished Grade 6 and 7's work with Monkeyman, to complete his primary education. He received top marks, so I'm very proud. In 2022, we started him on the Cambridge education his brother also did. Six of his subjects is through an amazing online school, and the others I teach him. He's doing so well, that we can push all the work into 4 days, only some hours every day. So he gets to sleep late, then work for a while with a break in between to have lunch and a rest. Then he complete the day's work and gets to play computer games or read or watch video's or whatever. He socialise with people online, as well as little bits outside the house. But mostly, he just sits somewhere, doing his thing. Which suits his body well.

With this approach, we were able to stabilise and even improve on the function he had in grade 3 and 4. He looks good, his heart is handling it all well, and he's academically fine. On par and excelling. I'm amazed how God lead us to what Monkeyman needed, at the moment he needed it.

So today Monkeyman is a 15-year old, almost-normal teenage boy. He's mature for his age, he's empathetic, sensitive, loyal, intelligent, with a sharp wit and humour, he's competent, somewhat competitive, but mostly calm, peaceful and sweet. He loves his life. We gave him the option to start with a normal high school, or the same high school his brother went to, or online from home like now. He chose the latter as he just did not want to suffer through school again. It was really, really hard on him, the last year in school, he still remembers it. And he remembers it as being lonely, because he was too tired to join in anything any more, even playing at break time, PT periods, sports, fun-days, etc. Always sitting on the sidelines, watching. So he prefers being at home, though I do see a longing to have a closer friend his age. So I'll see what we can do about that.

Next up, our last little one here!

PART V: Peanut

 
Our baby. Not a baby any more! She's now a 10-year old, very active, amazing little girl. She's spirited, fun, talkative, strong, sweet, caring, compassionate, kind, hearty, energetic, optimistic, intelligent, a thinker, and quite lively! So different to the others. One day, she cried. I queried her why? She said... “you're all weird, and I'm not. I also want to be weird”.

Bwahahahahaha.

That basically sums our family up! We “jokingly” use the word “weird”, so that the children realise it's not a heavy label, but something to embrace. Yes, our Daddy is “weird” because he's the epitome of what's called a “Nerd”. Yes, Mommy is “weird” because she's typical of an autistic – obsessive, impulsive, homebody, etc. Yes, Mr N too is “weird” because he is also a nerd and has epilepsy, which causes physical problems and medication side effects. And yes, Boeboe is the “weirdest” of us all, because not only is she also autistic and has physical birth defects, she is also artistic!!!

Me.... having an artistic and creative child? I would've cried with laughter if anyone saw that coming! But here we are. My daughters can both paint and draw and create animations and online art and labels and logo's and all kinds of amazing artistic things. I look at Boeboe's creations and designs for uni and I can again, just shake my head. How does she do it? I have no idea!

Then there's Monkeyman who's also “weird” because he's ALMOST boundary autistic, thus extremely shy and introverted, and also a little bit nerdish, and with this ever-present heart problem around which our household sometimes revolves.

And then there's little Peanut.

She's not “weird”. In no way, shape or form can or will anyone be able to label her with that. She's absolutely NORMAL. In every way. She looks normal. She acts normal (no social awkwardness). She has no defects. No physical problems or little “tells” like the others. She's not hugely extroverted, but MUCH more so than any of us. So to us, she's an extrovert. She loves socialising!! Unlike all of us.

And she NEVER gets ill, or when she does, it's a slight cold for a day or so. Apart from once for teeth, she has never had antibiotics!! She's 10 years old and has never needed to see a GP (General Practitioner or house doctor). NEVER. NOT ONCE. (No, I'm not lying!)

So she's a normal, healthy, happy and perfect little girl of 10. She socialise normally with other people and can even play with or talk to strangers without a second thought. She has very little autistic signs. No physical defects or signs except probably also the thin left heart wall (the cardiologist diagnosed it in Monkeyman, Boeboe and me, she did heart sonar’s on all of us as she suspected a familial gene) and of course, the diagnosed GERD and Gilbert's disease (tiny liver defect).

Peanut does suffer from insomnia. And that's about my only complaint about her ever! She's intelligent. Not hard-working. She's not outstanding in anything yet that I can pinpoint, like the programming for Mr N, the art for Boeboe, and the engineering mind for Monkeyman. She's more of an all-rounder. Talented in all areas. Nothing particular clear just yet.

Peanut is really, really, really different from us in her NORMALNESS. It's so strange, after having 3 special needs children, to then raise this absolutely FINE little girl. It was WONDERFUL. AMAZING. I cannot explain how grateful me and her dad is. For this normal, healthy little girl. Neurotypical and NO special needs. To NOT having to go to doctors with her. Not even a GP. Not even, ever, laryngitis or tonsillitis or flu or measles. Nothing. Oh, just scarlet fever, but like always, she was sick for about 24hrs. We didn't even take her to the dr because she was already feeling fine the next morning! She just doesn't get ill. And no signs of spina bifida, no signs of epilepsy, no signs of pulmonary hypertension. Absolutely amazing. She was diagnosed with the same non-working valve as a tiny baby by the pead and GE, which does leave her with regular feelings of nausea. And the tests showed the same liver-enzyme problem we all have, but it causes no problems for her.

Oops. I forgot. She gets nosebleeds. Badly so. Every week a couple of times, but fortunately it doesn't take longer than half an hour or so to stop. I find vitamin K helps, so I give her extra veggies that contains that regularly. Fortunately, she loves eating peppers, lettuce, cucumber, etc.

So for about 4 years now, we have not been to doctors much. No need! Monkeyman is stable, Boeboe is stable and on meds that just needs check-ups now and then, Mr N is stable on his meds and only sees a dr about once a year or more. And Peanut needs no doctors at all!! No meds!! We even stopped all reflux meds for a bit, to give our bodies a chance to recover from the side-effects of it all. So for a while, we just rested. RESTED from all the doctors and medications and enjoyed this last baby of ours and time as a family to all just LIVE. To breath.

And now Peanut is 10 and it has been a wonderful, wonderful 10 years. She's in grade 5, and we're homeschooling her as well. Why?

And this is what will lead to the next parts, now that the updating on the kids is done. In the May and June of the same year that Boeboe was bullied and Monkeyman's tiredness and heart caught up with him, things fell apart for Peanut as well at her school. Her teacher ended up leaving during the July holiday of her Grade R year. (Which in our country, means right in the middle of your very first formal school year.)

Peanut started at this school when she was 2.5 years old. She only went a few hours on most days. It was a playschool at the same school all the other children went to, so she basically saw her brothers and sister regularly throughout her day there. She immediately made friends and absolutely loved it. She also loved loved loved her teachers. There were 2, one for the youngest ones, and one for the grade R's, but the kids as a group played together regularly and both teachers watched them. So moving on from playschool to Grade R was absolutely no trauma at all. It was the class right next door with the teacher they were very familiar with. By then, she has been with these 2 teachers for 4 years, so they meant the world to her.

Then, something happened during the 2^nd term between her teacher and the owners of the school, and she ended up leaving during the July holiday's. Halfway throughout Peanut's year.

The new teacher was awful, and Peanut hated her, which caused severe friction and heartache. Here's a small example of the why. The teacher believed grade R's should be little robots and control their bladders. So even when a child stuck up their hand and asked to leave the room, the teacher would refuse until “break time”. Small things like that, but it added up, and was so very very different from the extremely compassionate and loving and kind teachers Peanut were used to. It was such a shock to her, that she started to hate school itself. Then, due to all of this, a few of her friends also left the school (the parents took the children out). Which just made things more sad in Peanut's life. She lost her teacher. She lost her innocence and trust in teachers. She lost friends. So she became sad, withdrawn, depressed. Slept badly, ate badly and was clearly a very unhappy little girl.

So when Boeboe homeschooled from September, and we realised that I will have to homeschool Monkeyman as well, I succumbed and took ALL 3 my youngest children out at the same time. So from grade 1, Peanut homeschooled. I know eventually she would've been fine again in school. It wasn't an urgent need with her, like with the other 2. It just seemed like the logical thing to do at that point in time.

She immediately turned back into her happy, funny, lively sweet self. So it was clearly the right decision for her. At the end of that year, almost all her classmates also left, due to the same problem we had. Such a pity. But the right thing for us, and I guess, them too.

We left Mr N in school though to finish his matric (last year of schooling) and write his exams in 2019. So he's the only one who never homeschooled. In 2020, he started working, so it turned out perfectly for him. And us, as that was the year lockdown happened. And we were all out of school already, and companies asked workers to work from home. We thus were safely cocooned in our house during the whole mess. We were not touched by what was happening in the world. We easily fell into a routine, working and schooling at home. We created separate little areas for it in our house. And only went out to buy groceries or visit family. This has basically been our life the past 3 years, as in our country lockdowns only recently lifted, and companies decided to keep workers that could, working from home.

So for those who did not register this through my ramblings. In May 2018, something happened to cause severe unhappiness for Peanut. Monkeyman's tiredness took a turn for the worst that same year and it became clear he would have to leave formal schooling. End August of that year, Boeboe was physically bullied and we were told to take her out immediately. All of that in the exact same year, within months from each other. After an extremely happy and good 4 years before that at the same schools for all of them. And Mr N was now approaching his final year of schooling during all of it.

Anyone realise that this was all just a little TOO coincidental?

The exact same year for all 3 the youngest, months apart, and Mr N only 1 year left. Now, to add to this “coincidence”, I'll continue my story in the next parts starting here.