They said I should write a book

My poor girl is getting roasted big time by her younger siblings! I was in my bedroom with her and Micaiah and she started trying to do push ups. She was complaining that she at least used to do four before but now can’t do any at all.

Micaiah said something about her arms…

“Why do your arms look so big and fat? It’s like you’re that obese uncle with the very big front tummy!” I forgot to even ask which ‘uncle’ this is because my girl started laughing at herself so I just joined her as I tried to see if her arm really WAS that bad.

I have one answer to the previous post. She is still gaining weight. She’s gained a kg in a week and is now heavier than her 20 year old brother. I told her our first goal will be to stabilise her weight before we even look at loss.

Then, later, her sister was outside looking all cute reading a book (The way my parents used to hate it when they caught me reading was awful.) so I silently went out to see her.

This is her when her ADHD meds have worn off. I love it.

Micaiah and Amarissa came out and then this little one said to me, “Mommy…I’m really worried…Why does Amarissa eat so much? All the time she’s eating. And now she’s fat.”🫣 Thankfully, the girl herself thought it was funny because we’d been talking about her weight while her sister read outside. And we’d checked everyone’s BMI and laughed at the results.

First, we’d calculated her BMI, the pointer moves, so it moved all the way round to red and ‘obese.’ We did mine, and mine moved to the upper end of ‘healthy.’ Yes, I know the stats are not for people like us because our body composition naturally has more genetic fat than who it was used for, and the creator apparently even said he had never meant for the BMI measurement to be used on the general public anyway. But still, our silly Discovery med aid still uses it.

Then we did her little brother and it moved less than it had moved for her and I. And then, her big brother. Our autistic who never gets hungry and eats only when I remind him to but I have four small special needs children and pain so I don’t make him eat regularly as I forget he’s my other baby…

His needle moved like two millimetres to the upper end of ‘underweight.’ My girl thought it was hilarious that his barely moved, while hers made an almost 180 degree move to the other end of the scale. At least she thinks it’s funny😩.

But she was also roasted by the assessor and I. In her absence, of course. The DISCO day one assessment was apparently lightning fast. The psychologist said I was the fastest parent she’d ever had. I bet none of the others already had four already diagnosed children! And hadn’t BEEN talking about autism for the child for probably two to three years like my friend and I have been.

The questions were very different to other assessments they use. Interesting questions. Things that opened my eyes to autistic traits I didn’t know about. Like how her refusal to get dressed and also to tidy up is clearly PDA. Duh! Because she doesn’t always verbally refuse like her younger sister does who has it and it is severe, I just thought it was only ADHD responsible for it. And things like how badly she does her chores were asked about too! And the answer is, VERY badly. Yes, she definitely ‘needs supervision’ for all her chores because she will pick up two things, throw them under the bed and she’s done. But there will 39 other things still scattered all over the door or the table.

Another one was how she wasn’t safe outside at age three. Most kiddies can go out and just faff around and then come in. She was eating weeds and flowers until she turned NINE years old! She was disobeying us and catching bees and getting stung last year.

Another one is all her climbing! It was asked about! Oh yes, climbs on table and dances about on it very dangerously. Climbs trees and hangs upside down. Climbs wardrobe shelves, kitchen counters. Yeah, an 11 year old doing that is one of the traits of autism! I didn’t know that.

And one roast was her common sense. We laughed because as she herself had observed when she assessed Amarissa alone, “She has no common sense! We mean that in the nicest possible way. But no, she has none!”

This was the first time I didn’t feel sad when answering questions. Other tests focus on deficits. What’s missing, or stopped happening. I understand why there are always tissues available. But this was about actions and behaviours and thought processes that exist and point to autism and PDA.

And of course, her total lack of social skills. Not caring that she is out in public looking crazy with pantihose on her head, never realising her skirts are always tucked into her leggings at the waist. And too friendly with everyone. The type that will happily go off with a stranger. Add how she runs away and you have danger. I plan to buy an alarm for the gate so it warns us when she goes out, though her father doesn’t care. Instead he even told her, “You want to leave? Then take your stuff that you bought, and go.” Or he told me, “I will take her to Dunoon on one of the Saturday drives I take them on, and leave her there and tell her to walk home. Then she will see if she still wants to run away.”

For the West, Dunoon is a huge slum area with a LOT of crime. One of our old church families used to live there. He has been mugged twice there. Why would you even plan to dump a child anyway, let alone there?? Another case for why he must never have unsupervised visitation with the children.

But yes, we got through much, much more than she had ever gone through so she doesn’t think we will use all the sessions we’ve booked. My body is glad about that. But so far, the answers point to autism with PDA.

And the BMI scale is on the middle of obese and still moving. Oh boy! And I just realised I forgot to hide food last night. To be fair, she herself roasted herself. I sent her birth sister a recent photo and like birth mom two days before, she commented on the cheeks and called her her twin as she too is overweight and has chubby cheeks.

My girl asked why she’d written “twin” when her (sister’s) cheeks are smaller than hers.😅😅

My poor girl has gained so much weight that even before the recent five kg she’s gained in two months, the paed said we need to keep an eye on it and decide when we next see him…

This was her behind her little sister 11 months ago.

It’s not only about how her mean father told me she looks like a toad, but it’s because she looks pregnant in her two remaining dresses that her arms can fit into, and because those have empire bust lines that hurt her tummy as they are very tight.

She has been wearing two of my skirts..below the waist as the waist is too tight. I had bought teen size underwear but it hurt so I moved to adult size small undies after she took mine without my knowledge and it fit, and crop top bras in adult sizes too, but they too are hurting her and digging into her now. I bought them two weeks ago!! And you long time readers know that with her low registration sensory profile, it takes a lot for her to eventually feel pain. So now I’ve had to buy a bunch of adult size medium that don’t have seams, made with the most elastic material possible. She wore my too large for me medium exercise bra and was comfy.

Something is terribly wrong when your 11 year old is bigger than your menopausal, unable to do proper exercise, self. I feel sad for her. I wish I could control her appetite. But with the meds she’s on, the anti psychotics that also caused extreme weight gain for one of the twins (The other twin and Micaiah haven’t gained extreme weight from it) I am fighting an unfair battle. I’ve added a lot of exercise in our schedule for her for when I have time, but yesterday she had OT and today I have an assessment to attend. But also, her appetite…

I will tell her, as I walk out the kitchen carrying laundry, that she cannot have bread and peanut butter when she’s going to have supper in 15 minutes’ time, and when I come back to make said supper, she’s made the sandwich,, left the sticky knife on the counter and eaten it all. She will eat multiple bananas in the middle of the night and anything else she can find. She takes fresh fruit concentrate but instead if diluting 1 to 3, does it the other way round with three parts juice and one part water.

I truly don’t know when her weight will at least stabilise like our twin’s has. She’s been wearing age 8 or 9 clothes for many months now. It needs to stabilise. It’s expensive, buying clothes every few weeks. It’s unsustainable and she already doesn’t have enough outer garments as it is.

I never considered clothing when I thought of extreme weight gain till now. I never thought of underwear digging into the body and causing pain. How do I make this the plateau? In have no idea. Exercise isn’t enough. I provide low carb, low cal options but she wants the breads and calorie dense ones.

If you know anyone on antipsychotics who somehow fought against weight gain that had happened rapidly, share the secret!

The descent into further sickness has begun. First it was the increased pain, worsening stats for my walking. My walking steadiness is also decreasing.

With the number of steps I have to take perhaps I’m overdoing it, I thought. As you can see, the improvement I started feeling at the end of last year was as real as the decline I’m now feeling.

But now, I am also swollen. It has begun. I started feeling stiffness yesterday when I got up to walk. My joints are cracking more and louder when I move, even my hip! It’s a loud snap like something has been cracked apart. Amarissa even asked me, “Why does your body crack each time you move?” It’s scary. When I sit down, crack, crack, crack. When I shift my weight when standing, crack! I sometimes look at the person I’m talking to wondering if they heard it.

This cracking is chronic inflammation where the ligaments and tendons enter the bone that causes calcification at the joints. Ie new bone forming at the meeting point. As you move, sit etc, they react. It’s also due to fusing and friction . It’s basically, a daily reminder that the medicine you’re taking is truly only slowing the disease progression down. It’s definitely not a cure. And that, is always a horrifying reminder.

When I was diagnosed, I had to mourn that not only would I never be cured, but that each day that passed, was the best I could ever be. The following day, is going to be worse, might not feel it, but it is a steady downward fall. We can’t stop it. And my lungs attest to it just as my feeling it in my body and just as my health stats do.

And so, dear reader, imagine how I am suffering having to be physical caregiver from 6am until 10pm when the last child can finally sleep. I told my eldest son last night that this morning it will be his turn. Sometimes I drive our loud little lady at 6am so she doesn’t wake her siblings. Yesterday I got her to stay in a room far away and she allowed technology to keep her soft. And my breaking my back bouncing her on a ball. Unfortunately, most of our cameras aren’t keeping recordings and we don’t know why. Their father is wondering if we should subscribe to a cloud service. Which costs a lot (but not even as much as one night in his Tokyo hotel.)

And this what I hate. Every thing I do to be a present mother, hurts and worsens my condition. Today, I’m going to email the paed and ask him to also add my 11 year old to the education department’s waiting list for special schools. I found a private school that seemed to be different to the others that want autistic children with average or above average skills and emailed them. They do fit her with her learning disorders and inability to ever do academics in the near future but with only a (current) ADHD diagnosis. I start her DISCO autism assessment tomorrow. An hour at a time, I go answer questions about her. I will take my water and my eye drops. I keep forgetting and that’s for shorter appointments and struggle to see when driving home.🥹 But yes, physically, it is HARD raising my special angels. I have a post planned on the difference between homeschooling them vs non challenged children.

I don’t even have a father for them. My talkative twin was so excited to tell him T got rid of a splinter that was fully under her skin and hurting her and he didn’t say a word. I guess it’s better than when our eldest girl told him she got 94% for an assignment and he replied by sending her a work link that he’s now on the Board.🙄 He’s always out going to go do his marathon training super early and for hours. He doesn’t care that he’s a father first, before he’s a ‘use all our family money that he claims I am finishing’ to pay hundreds of American dollars to enter the races, and then tens of thousands of rands for the flights, food and accommodation.

My plan is to ask for an anti dissipation interdict. See, being married in community of property, legally, he had no legal right to have sent half a million to his cheating on wife one and wife two brother against my express wishes. And of course, no legal right spending any money of a significant amount without my express agreement. The ‘in community of property’ marital regime was “designed for the protection of housewives who give just as much to the family as the breadwinner does.” And so, I will have to use the law because he doesn’t acknowledge me nor the God whose whole law is also an ‘in community of EVERYTHING’ law.

I just don’t know how. I don’t even know how I will find the regional court to apply for divorce! I don’t even have strength to go to the shops anymore. Let alone go and find it somewhere in town, and then queue? I don’t even know how it works. Now court interdicted for anti dissipation orders?? No clue. If you do, please share. It’s a court order to stop him giving our money away to the randoms he’s been giving it to, and to stop wasting our money on his personal unnecessary activities which REDUCE his already very limited time being a father to his children and take a lot of our money away. You do it when you’re planning divorce.

And please pray that I find someone to help me do this. I wanted to search yesterday, I found out about it while searching in the morning, but then my girl -who has been awake and noisy since 5am today, but is playing in her room for now- got out her bedroom and the day was just too busy. I need time. And four special needs children, planning, cutting, researching and a weakening body do not allow for time to sit up searching and asking coherent questions. Don’t ask me who I will ask as I don’t have a lawyer yet.

The swelling that’s beginning, and stiffness are in my lower back and fingers. Winter is clearly going to be the usual poop show it has been since I was an innocent high school pupil. 🥹

Like I hate ‘non communicating’ (weird phrasing) autism, I hate AS too.

Well, I woke up from a dead sleep with my youngest handing me a freezing cold ice lolly so I could open it for her. I went to wake her father so he could take care of her. I’d not put drops or ointment in my eye for some hours and my eyes were painful and gritty so I put ointment in my eyes and got ready to lie back and let them work. Alas, he did not parent her. So, at six am, I took her very loud self to the car for a drive so she’d not wake her poor siblings up. Usually she wakes them by entering their bedroom, too.

When we got back, her biggest brother and her father, were standing talking together inside the house. She put her hand on the door handle to enter the house, saw them, and put her hand down and decided she wasn’t in the mood for them. Off we went to the yard instead.🤣I don’t blame her! I wasn’t in the mood either! I’d not been able to see clearly as the ointment blurs your vision for some time.

The rest of the morning was same as always but a bit worse. She didn’t sit at all. I was trying to edit their nature video while she kept coming in and out, wanting, wanting, wanting and her siblings also coming every now and then wanting, wanting, wanting.

I walked into the kitchen, and the pumpkins and sweet potato I’d cooked for her and myself? She was finishing it off as I entered, her father silently watching her. there went the only vegetable I could eat.

But that wasn’t all! I’d made myself a gluten free veggie sausage. I opened the fridge, ready to put in my hotdog roll.

I had the bun. But no sausage. Her big brother had seen her eat THAT one. And there went my protein source. Yeah, it wasn’t exactly a wonderful day.

BUT, I did acknowledge how grateful the neighbours must be that she’s well now. Her digestive system is working sluggishly, so I won’t ever take a break from the lacative medicine ever again, but man, it’s lovely seeing her mot in that excruciating pain she’d been in. I am thankful!

I also love that after my telling her to, she turned the bubble machine on! Getting her to follow a command is more miss than hit, in the hit and miss cycle! I also love it when she uses her unorthodox voice.

I’m also thankful for small mercies. Autism is hard. Very hard. My firk is very finicky about what she will and will not eat. I’ve figured out that ‘manners matter less than health.’ She doesn’t want dished out food or fruit. Especially not grapes. She will eat sliced apples, but not grapes in a bowl. So, I meet her where she is and put a container of grapes of the right amount in front of her. Forget table. Forget bowl. Just wash and place.

Can you see the pumpkin she dropped? Or the grape stems? Or are you focusing on how the plan worked and she ate all her grapes? How about an apple? I took apples out the cupboard and left them in the bag but on the kitchen counter. She took the bait and took an apple and ate it! We had a good day. Stolen protein, stolen vegetables, eaten fruit. Diet wise, today was a win. 🥰

My watch is telling the story I have been feeling. I’m getting worse and I’m sad, because I’d had a few good months last year. My steps age becoming more asymmetrical-not good. Limping more unbeknownst to me.

The six minute walk tells you how healthy your heart, lungs or musculoskeletal system are/is. Mine had a few good weeks and now I’m getting worse. Is it my lungs? My heart which is creeping back up? My body which has had worse pain?

My medical aid decided I’m a high risk patient. They put me on a programme to check my BP. They paid for this newfangled BP monitor that is linked via Bluetooth to the app which then takes my numbers. As you know and can read here, this wasn’t a perfect combination of numbers. I don’t know what they look at in the background to decide which of their clients needs to watch their BP, but I’m one. The father of my children is their client but he’s healthy so they didn’t put him on the programme. Hmph!

And that’s where I’ll end, folk. I hope all the children wake up late in the morning! I won’t hold my breath!

Health wise, today was a win because I was able to reach over 15 000 steps despite how bad I feel. It could be worse.

Amarissa is worrying. It’s like she’s regressing cognitively even though she is the wisest and most perceptive, most aware of all my children. Her oldest siblings have been quiet, only when I sat them down and asked if they really believe I’m a happy wife like my biggest girl had said, that they then erupted with all the issues they’ve noticed over the years. “Now that you mention it…” was the refrain when I’d ask things like, “How does your father talk to me?”

Amarissa is the opposite. She’s so aware of her father’s sins that she sadly even makes up sins that match what he already is guilty of. For example, he is not respectful of my team of helpers-cleaner and Jack of all trades. He doesn’t appreciate how the children bloom with our male driver/aide. He ignores them when they say they like him, or talk about him, or ask if they can call him. This Sunday he ordered me to tell the young man to stop leaving his exercise bike uncovered. I asked why he even thought it was the aide anyway…And of course, it wasn’t. It was our non speaker.

But Amarissa picks up on that and makes up stories that reflect that reality. Yesterday she lied and said Twin A showed their father a photo of herself and our aide, and the father didn’t comment. Except when I asked my girl, she hadn’t showed her father any photo at all.

Now you see why I double check everything she says. She and her brother are liars extraordinaire! But besides the lying, her intellect seems to be slower. Not stagnant, but slower. She takes long to understand simple sentences. You have to say them in an even simpler way. She is very immature. She will want to be on the tablet while her younger sister is perfectly fine watching traffic when in the car. She will constantly want excitement while her sister is content to play silently or read. She acts like a four year old with her “I want” all the time. And because she’s also got that sneaky thing going on that made us think of impulse disorder, she gets her sister to come do the actual asking, thinking I can’t tell, or won’t ask, whose idea it really was. I hate it. It’s a the point where I need her to be in a school as she disturbs our peace every single day, many times a day.

Today, she ran away. She finally got out. I caught her twice before, then Vi caught her yesterday and then today Vi noticed she’d left the room where she’d been sulking and found her four blocks away. When my girl saw she was behind her, she ran away but got tired. I’m glad she’s not fit. She had a destination in mind. A lady who likes them. Except she is a veteran member of the Neighbourhood Watch and knows where we live.😂 But still…There is something off with her. And it’s getting worse. Maybe it’s the stopping the other medicine that’s been causing too much weight gain, I don’t know.

On the other side of today’s coin, they had a lovely time at their first ever Homeschool Art Club session!!🥰🥰🥰They have an aunty who has been looking forward to it and she won’t be disappointed to read my feedback. They and a ball. I’d told her how when I’d looked at the social media, the homeschool club only seemed to have boys. And yep, they do indeed! The teacher said my two were like complete angels compared to some of the boys, and I can believe it! As I was paying, I could hear a boy who just wouldn’t stop talking! Teacher had to raise her voice for him to stop talking and listen.

The girls themselves had fun! The teacher commented to them during class that they help each other so nicely and get along so well, and one boy said that it’s very rare indeed. Instead, when he’s done with art “school”, he gets home and he and his sister start bickering almost immediately. That was so sweet. Homeschool children are just so precious even when super boisterous. The one was like my Twin A when her ADHD meds have worn off or when she hasn’t taken any yet. 😂

I’m just glad they can never be the most challenging unless the two boys don’t pitch up for a lesson.🤭

I explained to their brother who is NOT into art, that I’m sending them because their academic future is unclear. They need to see what physical skills or abilities they have that can be harnessed into a job of some sort one day. (And Twin A is going along for the ride as she’d be jealous if she didn’t join in.) My boy said the only Club he’d attend is one where they teach about different jobs.

So, that is that! I sent my children to their first out of home ‘lesson’ ever and it was awesome. Only five boys ie. Small class, a very passionate teacher, and a good impression. I’m sooo glad they’re so kind to each other and to others. When a boy pretended he was going to throw rolled up paper at Twin A, she told him laughing, “You’re so funny!” Awww.

Today, they began paper machè wolves! Twin A yelled enthusiastically, “That’s my favourite animal!” The teacher told her that her favourite is the fox. It was my big girl who said she was “nervoused” as we were going there. Yeah, I told you her communication is not typical! But once she got into the room, she was right at home and I didn’t have to stay!

The only unhappy one was their little sister who cried and wanted them back home asap. She even got into the car to go fetch them. But let’s shhh about that part. It was WONDERFUL.

Everywhere I turn, in my hope to be free of the adulterer, in an attempt to stem the flow of money he’s spending -like R2000 a NIGHT, on his Japanese holiday, I come to a dead end financially. Impossible costs. So now what?

I will thank God for two little things today. One, is perspective. I am unable to articulate how anxious and stressed I am as soon as it’s morning and how that lasts all day. From 4am, I know that any time, one or more of my children will come and begin the day. When do I then study!? I know that my intellectually disabled daughter will pull me when I’m meant to be teaching, I know she will want the impossible, I know the others will fight and argue and constantly come to me no matter how busy I keep them. And that knowing, the lack of rest…I can only relax after ten pm. THEN I know they are asleep. But I don’t know when they’ll wake up in the night and come.

But, my 11 year old enjoys the very one who is most challenging. From HER perspective, she is blessed to have my most stressful, physically demanding, most heartbreaking daughter as her sister.

I mean, she does make me laugh. Like when she ignores everything I’ve dished out but then eats the very same thing from the pot or big bowl it was served from; a serving spoon, like here where for the first and last time for now, she was actually eating soup! She didn’t have any again, but those three bites were worth something.

But I worry and fret. The people who make the sleep sacks have shut down and nobody else that I can find so far, makes to order for big children like her. She will not sleep without a sleep sack. And because she pees through, every morning is wash day for her pyjamas and sleep sack.

My daughter doesn’t worry about that. She just has a cute sister she loves. Simple.

Second little thing is Uber. We finished our first part of medical aid savings in February already. R54 000 gone! So we’ve been paying the monthly medical aid premiums but also paying cash for all medicine, not merely the OTC ones the children need. This is the stuff that makes me think I’ll never be able to live separately even if they discover he’s hiding even more than the monies given to the ho and spent on his holidays.

So, when my son forwarded me an email I had also received from the university , I was impressed. They have partnered with Uber to give the students at their university 4% discount on Uber fares and free UberEats delivery. Not that he needs the latter as he’s home anyway. But still, going to and from campus is now a bit cheaper when he needs Uber. Which is something a friend of mine has been stressing about with me, given there’s no public transport from the suburb the campus is in. And that is my second little thing that I will be thankful for.

ETA – And a funny one that happened after I posted. The one fruit my non speaker has often, is banana. She will even eat three in one sitting with the fourth being taken away before she can eat it.🤯I wanted to order Celebration doughnuts and snacks (To celebrate our talkative twin aged six finishing Kindergarten in six months and now entering USA Grade 1, and a belated one for our 11 years partially entering grade 2) and decided to check if we still had bananas. We only had these few that I took out the box. I went to the Pick n Pay app to order, and we had free bananas already in the cart! Now that is a big little thing worth noting!

Every cent counts, any good thing that makes my children happy is good.

A post in a Christians with Chronic Illness and Pain group really resonated with me. It’s something I shared on here already, I believe. The person asked if she’s over sensitive or what? She has less time for nonsense now that she is living with incurable suffering. She can’t tolerate trivial conversations that go nowhere, and has no tolerance for people who don’t get it.

I wasn’t the only one who agreed with her. I recently cut someone out my inner circle. They kept reaching out to complain about her very loving husband and two healthy children who she has said herself, are victims of her very harsh temper. She knows she shouldn’t be as cruel and verbally abusive, but she is. And I am tired of the, “My life sucks. I have to parent two older, able to communicate, neurotypical, healthy children who can play together without my fearing they will destroy something or harm them and have to live with a loving husband who cooks when I order him to. How horrible is that??” Seriously, if you read her texts over the years. you’d want to cut your own neck instead of cutting her off.

But my children need me. So I told her that I hope she finds a community that understands her but I am not it. Oh my word, people truly think you owe them access to yourself the way THEY want to access you! I come from a generation where not everybody even had a landline! Let alone a cellphone! I would take the phone off the hook if I didn’t want a phone call at a certain time and that was that. Nobody demanded I never NOT answer the phone. I made it clear that she can send me an sms, she can email, she can phone me. But nope, she wanted to be in my WhatsApp world.

Nope. My WhatsApp world is for people who aren’t draining. I don’t have the bandwidth for nonsense anymore. If you are using me to vent, stop. Go vent somewhere else. I need proper friendship and true community, where we all care about each other.

As I sit here in pain even in my sternum, I think back to two people who were in my actual presence -not counting the sweet ones who have sent money for meds or surgeries, incontinence alarms for the children, Hope and love -who are what I have time for. One person is the one in the photo above. We didn’t have a diagnosis but she knew I was suffering. I have spoken about her too. How she raced down the mountain so she could stop me over using my body. I don’t know if the depth of “I matter??” I felt that day. It’s not like I had told her my body was aching. We didn’t talk about me. But it was on her mind. That is someone safe. Someone who sees me even when I’m not actively trying to open her eyes to my reality.

Another one, also happened on a Sabbath. After a long day at a church the adulterer was preaching at, I went to the car, silently hating the long drive home as it meant I still had a long wait before I could take the pressure off my swollen bones. As I chatted to an old friend, she asked, “But how are you? I worried about you when we were kneeling to pray. I didn’t like knowing you also knelt down given you live with so much pain.”

She opened the dam. I just burst into tears. Kneeling HAD been hell. It’s always hell. “But why would anyone bother thinking about ME?? I matter?? I hadn’t even said anything about myself all day! It was about her and church…”

That’s what my WhatsApp is for. For people who hear me. Not for those who want to educate me on things I know more about because I live them, not for people who forget how privileged they are to have healthy children. It’s for people like a young lady who didn’t realise till this week that the twins are autistic.

It’s for people who express shock and sadness because they fully comprehend what the impact is of what I’ve told them. My inner circle is for those who admit that parenting a neurotypical child is hard and they appreciate having a break when the child goes to her mother (child’s grandparents)so how does a homeschooling mother who is constantly with her multiple special needs parent cope? It’s in her wishing she lived nearby to do anything to take the weight off. It’s THAT. It’s living her reality which of course, isn’t trouble free, while also seeing mine properly. It allowed me to tell her honestly that I felt so jealous when she told me her daughter had gone to spend the holidays with her mother. The privilege of support, rest, is appreciated by those I invite into my world. And that’s seemingly typical for many of us who are sick.

We want to be seen just as well as we see others.

I remember these two ladies who saw me because it’s so rare for an invisible illness to be seen, and for people to acknowledge what is not spoken by the sick one. I’ll never forget it.

I survived reflux and baby colic by telling myself, “Soon they won’t be babies. They’ll take care of themselves. They won’t need me. I’ll be able to get chunks of time to myself.” I’d been spoilt after all. As I keep reminding you, by age six and seven, my oldest two were asking to watch sermons (aimed at adults!)! And they did watch. Sometimes watching two, and the sermons were over an hour long each. So I would cook, clean, not even plan any lessons because they just moved forward each day and they didn’t need extra help, read my Bible, minister to depressed people without interruption. If they weren’t watching, they were playing peacefully together.

I had breathing space and I appreciated it a lot. I was very thankful that I’d come out of the sleepless and rest-fog of their baby and toddler years.

You can’t rest or relax with ADHD. Even if they are playing happily alone, they are probably being destructive or dangerous. They need someone watching them all the time. We are in a terrible heatwave and there’s a fan in the hot garage where there’s also a play room. My 11 year old – it’s always HER- damaged that by putting ribbon in the fan while it was blowing. Now it’s all coiled up around the turning mechanism.

I had to buy a new vacuum cleaner because of her. Do you know how expensive they are!? All because she had let pool water into the garage and thought she could vacuum the water up. The vacuum was NOT one of those fancy wet/dry vacuums. She didn’t tell anyone. She never does. Either vi or I find it and I immediately know who the culprit was, and when I ask her why she did something, she asks, “How do you know it was me?”

Microwave I was using to heat my heat packs for my bone pain? Dead. She killed it. Wardrobe shelf in her room? Broken. She smashed it in anger.

School time? My six year old twins are both needy in different ways. Remember, I’m not meant to be teaching. I’m meant to be resting my body. But our talkative twin wants to do more school lessons than she needs. That is the down side of being gifted. They want more. They crave more! And then gifted and autistic means you just know that what you want, is what others also want for you.🫣

Her non talking twin will pull me when I’m teaching. And if I try refuse, crying ensues and the class is still disrupted whether I leave or stay. It’s bad. As I told a friend who asked how I am today, I wish they made daycare centres for intellectually challenged children where she could go and be watched and kept safe but not forced to sit in a chair and learn like all the other places want. But if other parents can’t find such a place, and I’ve never come across one except one that very quickly shut another mother down when another mother…Ok, let’s try that one again.

A mother in one of the groups, asked where her child could go. She was virtually describing my non speaker so I kept an eye on the answers. One place needs them to be potty trained. One place is one I had seen, a place a friend called Mercy had looked at and suggested, but their staff member very quickly stated they only take care of cerebral palsy children, not autistics who can move around and need one on one care.

I am willing to send her aide with her to a centre and I just suffer teaching the others till the government lets them in, which can take more than four years!! 🥹. I have no option. He has two daughters so maybe he’d be willing to change the diaper? Maybe? We had males changing diapers in a centre I worked at for disabled adults in the UK. But until I find a centre, I can’t even ask anyway.

Then I have my oldest two. My son was meant to put food in the fridge that I’d killed myself cooking yesterday. I chopped even when my hands got sore. Chopping baby tomatoes in half, chopping yellow and red pepper, and a block of firm tofu. Imagine being in pain chopping such small things! Mt feet were so sore at night. I woke up today with bones screaming. Even in my teens, chopping butternut was beyond me, but this..? It truly is a progressive disease. To see all that effort and food go to waste was awful.

We’ve had a heatwave. And even if we hadn’t, we always put the food in the fridge and I have always taught that. Alas, the food was NOT put in the fridge by the one on kitchen duty and it is off. All the tofu! And it had looked and tasted so good! It was a scramble with spinach, red and green tomatoes, yellow and red pepper and I’d mixed cumin, coriander, paprika to a bit of water and seasoned it with that, with a sprinkling of garlic powder -and obviously, salt. All gone to waste. It had been enough for two meals! And as I said, my six year old doesn’t care about mommy cooking, mommy must teach as soon as the six year old is ready. I fought for that cooking.😆(To go with sweet potato, cucumber salad, glazed carrots.)

But that’s not all! I then have my 19 year old in a different province who has a pest after her. And it’s the security guard working in the complex she lives in! In the morning no yesterday, she told me that he had told her to go talk to him in the security hut after classes. I told her I didn’t trust him and he sounded like he’s trying to hit on her. She said no way, he’s “normal.” He’s been there since her brother was there and now is not there anymore. Even worse. He’s watched long enough to know she’s alone. I told her men don’t care what age they are. She brushed me off.

Then afternoon came and she told me I had been right. He was definitely acting like a creep, despite his old age. She even told him her unit (house) number because he was so persistent! She recorded him. And later that same day (yesterday, when I started typing this) he dialed through to the unit on her intercom. He said he had tried to call using his personal phone but it didn’t go through so was using the one owned by the Complex. He asked her which mobile network she’s on. She then pretended she couldn’t hear him till he ended the call.

Very, very bad. I am terrified for her. But her dad is relaxed. He thinks that as long as he’s moved to another location the risk is gone. But he will always know which house she lives in and that she’s alone. I remember some pastor in that same province whose 21 year old daughter was found deceased in her gated complex flat. I am not happy about how blasè she and her father are. We need to be vigilant.

I have cut my post short. My sick girl is just screaming too much and my leg pain is extreme. I can’t think and I think that pretty much sums up this kind of special needs parenting. So many needy children day and night means very little sleep, and very little time to think. I cried yesterday over how I can’t even utter prayer without being interrupted. How do you fuel up when the fuel pump gets stopped before you’re done pouring fuel into your tank?

I can’t even live in hope anymore. It isn’t getting better and I’ve seen enough adult autistics with intellectual challenges to know it most likely will NOT get better.

And so, I leave you with a small positive.

We’re done – with Maths K! We had a ‘final exam’ for our Kindergarten Maths today. And despite all challenges…

Like a twin who found crisps meant for everyone for Sabbath and crunched loudly,

and despite being crawled on,

Our girl got 100%. She finished a whole year’s Maths syllabus in six months. Which she said was too long! And we are in her final English and Literature chapter. They’re still doing sight word revision but she already knows them and needs no revision. And she will learn more about antonyms-our current lesson-in upcoming years too. Mind you, I don’t recall ever learning antonyms when I was six. But then, I wasn’t American when I was six.😆But I do assume they will review them as she gets older.

Another positive is that my 11 year old thanked me for keeping the notes and letters they write or make for me. She told me that her father only kept one thing, something her little sister made. I keep them because each one encourages me. In school, we were told to make things for Mother’s Day or Valentine’s Day. As a homeschool teacher, I don’t even mention those days, so these are purely from the heart. To know that curse is done away with, means a lot. My mother was not only distant but cold that the only notes I wrote were to ask for necessities, as I recently shared. For them to be able to tell me they love me is amazing. I marvelled yesterday how as they walked out the door, Amarissa casually yelled, “Bye Mom, I love you!” I couldn’t believe I could have a child who feels love for me and wants me to know it. It’s always beenI wanted to have a Cosby Show type family. Where feelings weren’t taboo, and love was the ruling principle. I have achieved my part. And THAT, is encouraging.

It’s 16:59 on a Friday. I’ve just finished making up a new batch of scrambled tofu with baby tomatoes and spinach and peppers. I’ve made sure I put it in the fridge myself!

Shabbat shalom, no matter what that will look like. Even in the hurricane, may we feel seen and strengthened enough to try survive yet another day. Many others have fainted along the way and chosen to end the suffering while bearing less. So I mean that with all my heart. May we find the courage to choose life, for another day.