Author: Grace by any other name

Sjögren’s disease has my digestive system in a stranglehold. Twice now – the last two mornings- I’ve had the burp of fermented food! I googled and yep, Sjögren’s does that! Your ability to move the food out your digestive system slows down due to lack of liquids in the digestive system so you have all the issues I have. The constipation, feel full but still hungry, burping OLD fermented FOOD which makes me want to vomit, pain so bad I woke up Friday in the night thinking I was having some horrible kidney stone pain.

The solution? Or at least, the attempt to reduce the symptoms? Have small soft food meals throughout the day. But I can’t do that. Eating while stressed is bad for the digestive system too! And during the day, from 6am to 20:30, I am stressed and constantly interrupted. If the children are on a drive, I record or edit, I don’t relax and eat! If not, I’m preparing school or reading up on activities to improve executive functioning…

I don’t have time and space to eat during the day. And eating one big meal at night? Worst thing a Sjögren’s person can do for their health. I’m in trouble.

I have bad nights… Horrible days. I lived with no night time AS pain and reduced daytime pain for six lovely months until stupid Sjögren’s. I had energy but now Sjögren’s has stolen it. I wake up and have to almost pull my eyelids up to put more ointment in my eyes, drink more water. But still, I catch myself reflexively rubbing my eyes and then getting scared I’m making the existing damage much worse.

I cannot accept this. I don’t want to. I want OUT! I don’t want this life. I am tired of never ever being ok! I am damn tired of not being ok. When the junior guy at the opthalmologist’s was doing my tests, he was shocked I’ve worn glasses for 35 years. I thought, “That’s nothing! Try suffering pain since age 3…42 and a half years of misery.”

I am tired. I wake up and force myself to shower, get dressed but the truth is, those use up precious energy.

I am ready to depart and wake up like Lazarus. Perfectly healthy.

But in the meantime, though it’s killing me, I will keep my children -from the sick 20 year old to the youngest, eating. I was sooo pleased they wanted more! But oh, I wish I had a partner to take my little ones out for the day so I could rest.🥹

I..want..out.

By the time I ended this post, she was crying a loud. 6:20am. A very long tiring day has begun.

I couldn’t walk.. for a while today. Last week, I took my walker out to the garage. I hadn’t used it in months! That’s how well Rinvoq is working! But today, I had to ask my children to bring it in, all because of their sister.

As you know, she has had a rough few weeks that have been progressively getting harder and tougher on all of us. She has been screaming randomly, crying for prolonged periods. And we don’t know why. Before, she was crying because she was having a tantrum-she wanted something and if we couldn’t make it happen, the tantrum starts, stuff like that. This was like she’s in pain. It was horrific. She was so loud that her aide could hear her while parked across the street in his car, our house closed up as tight as possible so as not to bother the neighbours. When she starts, I go round the house shutting all doors and windows.

It is horrible. It raises my already existing anxiety and stress from raising multiple special needs children by a lot more. I already don’t want to get up and face the day as it is! So, yesterday was one of those days. Multiple times a day, for long periods. Children discomfited by their youngest sister, all trying to figure out how to “Stop her!” I had to try comfort her while telling her irritated older sister that she wasn’t doing it on purpose. I gave her pain meds, I gave her meds to stop stomach cramps. I wondered if it was the Ritalin causing it. Was it the side effect of stomach pain and nausea? Or headache? What if it’s pure emotion caused by it? Reddit threads are full of adults on Ritalin unable to regulate their emotion and suddenly crying and feeling extremely emotional.

This is what she did to her poor sister’s lip. Oh my word this life is soooo hectic. Speaking of my 11 year old. Poor girl has gained massive amounts of weight. She was so hungry she was waking in the middle of the night and making noise looking for food. I took her off her antipsychotic in case it was the cause. But then today her emotions were .. psychotic. She was crying for no reason. She was very angry. The very anger that had made us put her on the medicine. Irritable. And by this evening, she’d told me she wanted to kill her father – twice.

So, back to Abilify she went. I’ve emailed the paediatrician to see if there’s any other option. Risperidone gave her that horrible dystonia where she couldn’t control her muscles including her tongue. Shaking, head pulled down sideways, tongue out her mouth. It was awful. I don’t know what else can be done. But murder? Not an option!

I had given her screaming sister only half her Ritalin dose yesterday. But nope, the discomfort that she was feeling – physical or emotional- didn’t care about the reduction. She still screamed. One time she aimed for my eyes. It was terrifying having to quickly get jk before she tried again. Another time, she came and sat on me. Mainly on my right leg. And that weight, is what has killed my leg. Also, I changed her diaper too. Her father gone to Tokyo to go run a marathon, brother too sick to even count as existing when it comes to handling his siblings. Pain.

And so, today, I struggled. The pain, the weakness took me back to those times when I’d almost fall. I had to get my walking frame and use it.

Thankfully, it ended after three hours. By the time my talking twin wanted me to exercise with them, I could walk. And I could exercise with them just as she was about to start crying because her older sister was telling her they don’t need me. Needed. For comfort and for exercising.

They were eating avocado. Sister in pink told me she looked like she’s autistic because of the noise canceling headphones. She didn’t see the irony, given her sister is autistic!😅

Today? There’s been grunting that usually leads to the uncontrollable screaming but so far so good. I hope she stays stable. And I hope her 20 year old brother who had wanted to avoid the doctor, starts recovering. He’s been given steroids, antibiotics and other meds. “You were right, my sinuses are very inflamed.”

And oh I pray so hard that Sabbath won’t be as awful as last Sabbath.

Please hope so with me!

My positive of the day is again, how in love with learning her twin is.

Meanwhile, she leaves her poor siblings totally blank. The other day she felt we were leaving her out and came barging in telling her siblings that she learnt about Hasui Kawase who was Japanese and he did landscape paintings and cherry blossoms which were very beautiful and then his paintings were destroyed in an earthquake and then he died.😅🤣

She had already lost them at his name. They had no clue what landscape was…

And no interest in paintings and Japanese history.

When our Maths lesson ends, she asks if we can continue later. Thankfully for my body, her ADHD takes over in the afternoon and she forgets she’d wanted to continue with Maths.

And nope, the screaming has begun. Oh well…

Hey, at least she’s not screaming in her bedroom instead of sleeping. She ‘only’ screamed for about 10 minutes this time. It’s a semi win.😅

It hurts! Tightening/interlocking my locs hurts! Ribs, shoulders, the bones I use to sit…I want it over and done with but my day didn’t belong to me. The title was typed yesterday evening when my girl who had made me hurt myself badly by changing and dressing her in the morning, was still making me hurt myself in the evening by making me follow her to the garage and other places while I was trying to replace today’s burgers she’d found and eaten.😫

It’s 1am and I’m awake because a door leading outside suddenly swung open loudly and bashed against the wall, waking me. 😫

I want you to rescue me from my girl! When I try fill the pill boxes – her twin sister has also joined the pill box users now that the paed knows she can swallow tablets-she pulls my hand as I’m counting, opening the pill containers, and pulling tablets out the blister pack. It is frustrating. It means walking to where she’s pulling me to, extra standing and walking for longer than desired,and it hurts.🥹

But refusal will lead to a tantrum. She had a meltdown yesterday afternoon while her (their) aide was here. I felt so bad for him, he was hovering around so close to her and she was unable to regulate herself and nothing would calm her down. You could see his “How do we fix this?” nature coming out… Her rampage ended with a satisfying breaking of an unopened Purity baby food glass jar.😩

Rescue me from the insanity which is present daily and dysregulates every child.

Her twin and bigger sister also took me hostage in the evening! Wanted me to bake a cake. I obliged and got them to work with me so they feel like they were part of the process. It was nothing fancy. I ordered a gluten free cake mix pack because it’s cheaper than getting all the various ingredients separately. I looked forward to eating some. But a certain girl ate lots of it. And it wasn’t the six year old who had been begging me to buy a mix for them.🤦🏾‍♀️

The previous day, I’d wanted to tear my hair out! I need two avocados to make ice cream with. I had four in the fridge. They asked to have one and I agreed for them to have one. Next thing I knew, each had their own one and there was only one avocado left! But hey, they enjoyed working with their avocados and eating them!

My food thief talking about her autistic sister, “See!? It’s like she’s autistic. Wearing headphones…” Funny all the other stereotypes she doesn’t mention which also make her sister really seem autistic, like hand flapping. But it was cute because she found it cute that her baby sister felt she needed to wear them.

This photo below shows you another time I was captured by our roaming non speaker while busy! But to be fair, she had been miserable and we didn’t know why, so I took her and made her lie down on me and she took advantage of that. Going from sucking her thumb to manipulating the video all while not letting me get up. 😅

2:18am. I keep falling asleep and then something wakes me. That’s been the trend whether or not the children wake me in the night or not!

What I do also need rescuing from is her gifted sister who keeps asking for this and that every single day, many times a day. “She’s the smart one,” Amarissa says cheerfully after following her to my room as always. She finds it easy to say because she herself is creative. But regarding her brother about whom she asked, “What is Mickey’s strength?” I have no answer. Truth is, he is failing in every direction. Motor skills are stagnant. But I’ll see what his OT report says and see. But from what we see at home, he is not creative, not academic. Not able in a way that would see him in a specific direction in high school especilaly. Private special schools ask for his psych reports when I ask about space in their schools, and then keep silent when they’ve received them.

I need rescuing from stress and heartache.

I signed two of the children up for ‘schools for children with learning barriers’ through the government with the Paed despite the dad saying the schools aren’t good enough. Last I knew, waiting lists were two years long and that already is a long wait that just demoralises me. Then, last night I saw a post by a mother in my ‘district’ -we don’t have a special school in our district so we’d be sent to another- saying she’d been waiting for four years for her autistic son to be placed. He’s not coping in a mainstream school and is often called to go fetch her son by 9:00am. If even those already in the government system have waited this long, what hope is there for mine?

Rescue me from dejection. I was meant to have sent them all away two years ago already. I feel the pain when the day is done and I still have to plan lessons or find ways to try reinforce what the two aren’t understanding. Four more years of none of them going to school will kill me. I force myself to go plan based on their performance and how far they got during the day.

And so we come to me. Our non speaker has had bad days. Lots of screaming, crying, smashing of glass jars of food. I was never good at remembering my own medication as it is. Now with the increased anxiety and busy-ness, I go days without using my inhaler. My eldest has been in bed since Monday. Very, very unwell with bad fever, sore throat, abdominal pain and diarrhea. I’ve gone without using my nasal spray for too many days than I can even remember and now my sinuses are blocked. Forgot to put eye ointment in so my eyes are bad.

(It’s 1:33am the day after I started this post.) The headache, blocked nose, gritty eyes and need to brush my teeth can’t be ignored. I’ve just sprayed my nose and am hoping my throat is ‘just’ sore from the dryness and not from catching my boy’s bug. I had been going in an out with medication, liquids, honey etc and last night we just couldn’t handle his poor sister who had had a bad day anyway, so I called him to try.

Rescue me from neglecting myself.

And I will hope for your rescue from anything assailing you. 🙏🏾

The first opthalmologist I saw is a doddering old man who didn’t even know how to test my eyes for dryness and writes notes on a card as small as my hand. I didn’t think anything of it but the rheumatologist’s admin asked for a report. Which of course they’d not told me to get so I didn’t have one. I then made another appointment with the group that’s been-not very successfully treating my son- not successfully because there’s been no continuity in doctors on weekends and what the first doctor said he’d do is not what the second one did. And his eyes remain not great but they claim they know the reason why. So we wait and see what happens at his follow up appointment…

Back to this afternoon’s appointment. As soon as I mentioned dry mouth and throat and chest that hurts when I’m exercising or breathing in deeply, the female opthalmologist asked, “But why hasn’t your rheumatologist tested you for Sjögren’s? It might be negative and still be it, but it might be a positive test and then you’d know!?”

You tell me! It’s what I’d lamented to a friend earlier this week. They merely told me I don’t have lupus and then left it at that as if I’d even asked about lupus! In my reply, I told them I was wondering about Sjögren’s but man, that practice sucks when you’re not directly in front of the doctor. The very first time I mentioned my symptoms, I was told that Lyrica causes dry eyes. I told them I’m not using it! No acknowledgement.

After the first opthalmologist appointment and they’d asked for a report, I told them the doctor had taken down the list of meds I’m on to research if they could cause dry eyes. The admin said, I kid you not, “Yes. Lyrica and sleeping pills can cause dry eyes.”

I again told her I am not on Lyrica! Nor am I on sleeping pills! I took Lyrica for only one month last year! Haven’t had it for five months! I’m wondering about Sjögren’s.

No reply.

In the meantime, my eyes are both already damaged by the dryness and scratching. They’ve changed shape. They saw this via scans they take of your eyes. I’ve never had my eyes scanned before. I was extremely grateful I was there!

And there we go. While the rheumatologist’s team fob me off with telling me my problem is medication that I’m using, my eyes are damaged. We will check on their state in four months and if worse, make another plan besides the drops and ointments etc.

She gave me a pathology form to test for Sjögren’s and told me, like, seriously told me. So seriously so that she stopped typing and made eye contact with me when I didn’t agree with her, that my dear adoptees are blessed to have me.

I think because of how they behave and how no children’s home would be as kind, sending for so many assessments, aware of specific challenges, I agree. I mean, even some mothers have said they’d have never even thought of things like visual processing disorder, or dysgraphia or dyscalculia. My poor children would have been told they’re not concentrating or stupid…

But I too am blessed. They are teaching me how to love as Christ loved me. I knew Him, so I thought. I thought I was showing Him how much I loved Him. But as knowledge increases I realise I was a big disappointment despite how well meaning I was, yet He never gave up on me but kept wooing me. And so even as I deal with unpalatable things like one smearing bodily fluids on walls while ever repeating how much they love me, I grit my teeth, dispense discipline, ask the child to think about the purpose of things before they act, but also know through research that it is sadly quite normal for children and adults with her condition. And so, I extend grace. Forgiveness. “Forgive her, Father. For she knows not what she does.”

My girl told the psychologist that I gave her the best gift ever. When she’s feeling sad or angry or overwhelmed or like she wants to disappear, she goes and folds herself in the blanket I gave her that promised her she would forever be my little girl no matter how old she’d grow.

She loves me as imperfectly as I love God. I meant it when I said it but my actions don’t match. Not yet. Step by step. I will give her the same patience and understanding I received when I would step forward then fall backwards before stepping forwards again. If He loves children, how much more does He love children with additional needs?

We are all privileged to have each other.

Tonight as my girl watched me cooking peas for them, she told me she worried about me because she didn’t know how I kept going. I’d made them a pineapple smoothie, continued cooking, tidied up and still was standing preparing their food for tomorrow. She saw me.

I will also have ongoing glaucoma tests as it is highly heritable and my mother had it. So far, THAT test was great. We have a baseline for the coming years.

And that, my friends, is that. Out with the old ( doctor) and in with the new. My sight depends on it.

I suspect my non speaker is having a very hard time when her Ritalin LA wears off. Why is it in the evenings that she goes crazy? Violent, angry, screaming and full of tears and snot? It’s awful. Loud. Traumatic. And the constant hum of anxiety I have becomes a loud roar of helplessness and sadness for her and for us.

It’s not ok that you can say your afternoon was “better” because the screaming didn’t last “as long as the day before.” It’s not great that “at least none of my hair was ripped out today.” No. It’s messed up. And in the aftermath, you can’t see how terrible the storm was. Just like before, you couldn’t predict that there would be a storm.

And man, there are many storms.

This was her in the morning. Just suddenly started working on an Afrikaans body part puzzle and did it perfectly! And because she’s so quiet, you don’t even realise she’s ‘busy’ till you really look at her. But with two other very loud children, it took us all a while to realise.🥰

And a bit later on too.

But that same day, we had over an hour of screaming. She spat out any and all medicine even when we thought she’d calmed down enough. She spat out her sleep medicine. Spat out everything that would calm her and threw things down that she herself would call for, like juice. It was prolonged torture and she ripped my hair and finally got two pieces.

Yesterday also began fine.

I was accompanying her into the car where she likes just sitting sometimes, and she said, “Garses!” so I lent them to her.

But the storm this little work out, just basically doing a squat over a chair, and then a very mild ten minute children’s work out has brought me excruciating pain that made itself felt at 2am when my dear 11 year old girl started bashing around the house and banging her door. It’s 3:35am and I’ve just gone to tell her to stop making noise and sleep. But she’s just made more noise as I type. The pain in my side, my hip, is horrendous. It’s a combo of joint and muscle pain. I’ve taken my pain tablets for muscle pain and will see! As my friend said, it’s not cool that the very thing you’re trying to do to reduce the effect of AS on your body, causes AS to strangle you and cause you so much suffering.

This just looks like a car door. Nobody would know it’s the aftermath of the evening’s screaming attack where she undid her seatbelt when we’d hoped going for a drive would calm her but if not, would save the others from the noise. You don’t see the food she threw down. You don’t hear the screams that drove her siblings away from the area she was in.

You also don’t realise that this laughter in a bedroom is not the norm. They’re usually together in the sitting room. But she’d been screaming too much so they went elsewhere and isolated themselves.

The aftermath is calm and quiet.

You don’t realize that my hair is up on my head so my girl can’t grab it and when it’s hanging down my back and break more of it.

But the trauma and physical pain on all of us of all these conditions combined can’t be erased.

And this trauma reminds me of something I was trying to tell a friend and of a reason why I agreed with another friend that I’m in danger.

There are times the man who pretended to marry me is so cold that I fear for my life. I once thought he’d ram the car into me. He got in with this very cold dark look on his face where he couldn’t hide his hatred. I had asked why he was so cruel and cold that day. He just asked what it had to do with me. Another time was when I asked if he’s still in his ego relationship with his ho. When you’re happy in sin, you don’t like reminders that your actions will come back to you in a whirlwind. You feel attacked instead of prompted to change.

I am truly afraid of him and I have reason to be. He had two weeks of unbridled cruelty unleashed against my two oldest. It was a few years ago. I didn’t even know how to protect the children because I didn’t know when his fury would come out. One time we ate just standing in the kitchen and my oldest son says something really ridiculous and he whacked him HARD on his skull. My son gave this God awful yell and he screamed that he couldn’t see. He couldn’t see. I’m still traumatised. His vision was distorted for a whole day after that. I was so scared he’d never be ok.

Another time, he took them to the garage and whipped them with a chain. I was keeping the others away and he was talking like a robots the robot he looks like when it’s like he’s contemplating smashing into me as I stand in front of the car. “You must respect me. Who..do..you..think..you..are?”

And that’s been a cry he’s aimed at me for years now. In 2016 when I asked what he thought his God would have done with him if he’d died in his cheating, he told me I was being disrespectful. Another time, I asked if he didn’t see the irony of how if he’d died, people would have claimed he’s such a food family man yet a stranger would have known he’s not at all family oriented. He again accused me of being disrespectful. I asked him how long this stupid relationship would have gone on for. He told me he had no reason to be interrogated by me.

And so, when out of the blue he suddenly attacked our first daughter, causing her to fall together with a wooden chair, bursting a blood vessel in her eye, I was as shocked as she was. He had never been violent before. It was the most painful thing to hear people asking my child what happened to her eye.

Each time, I told him he had damaged my children. This was how he was raised by his mommy who he worships. All his siblings and he himself attest to how cruel she was. He’s told me multiple times of the weapons she used on them. I heard her myself beating her 19 year old (The one she had with her married lover. It runs in the family. Evil and adultery. All of them. Father included) when I lived with them in the UK. And then she’s surprised she had to call the police once when he then grabbed her by the neck to stop her?

Yet hey, he told me I’m a bad mother. “You should be like my mother instead of laughing with them so much.”

Says a lot about what bothers him. Our happiness. And someone who hates you being happy is someone who hates you.

The aftermath of abusing your daughter, son and wife, is a daughter who bears trauma and is determined to never allow herself to live a fake life. I guess this is why she makes herself so available to other hurting girls. Girls who say she’s the only reason they haven’t killed themselves. Girls whose parents are just as cruel as her father.

And so, when a man who said he admires my husband wrote to ask me to meet with him, his wife and others and the father of my children, I refused. I was mistreated last time that happened. By both husband and him and another elder. All of them demanding that I act unhurt and as if I’m loved.

Nope. The aftermath of their furthered abuse is a stronger woman who bows to no man who isn’t a man indeed.

But that places me in danger. He never again did act violent. But a man who can give tens of thousands to a ho has no morals nor integrity and is capable of anything. Anything to free him to enjoy someone who doesn’t expect him to be anything with standards but just a sugar daddy.

The wounds on my heart are invisible. The pain mommy body makes my daughter ask how I can smile when underneath my skin is torture. The same reason I smile despite being trapped with a cruel man who never had any intention of ever keeping his vows. Why propose when you don’t propose to be a husband? Why not just live as an immoral bachelor?

It’s 4:08am and the pain is reduced a bit.

So, I end with the few light moments of yesterday. I had a few.

Ms Naynay was telling her ten year old brother about how she’s almost finished her current grade which she began six months ago(!) and is “going to start a NEW grade! Look, here are my books! Here’s my Maths! It’s so exciting!”🥰🥰🥰

It’s her still telling me often that she loves school and is so thankful I’m teaching her “all these things.”

You can’t see clearly but those little bits of light are something she got out of bed to come get me out of bed for last night. “You need to come see something!” Ok, ma’am!

Their planet floor puzzle glows in the dark.

It’s in how this one RUNS to the TV when certain songs play. This is a sensory delight for her!

It’s also in how my Amarissa made sure to cement what I said to the psychologist who will be assessing her about her low cognitive and basically ALL abilities are at a much younger age so she relates very well to her six year old sister.

She took her tablet for her session so she could show the psychologist a photo of her sister. I knew it would make a definite impact given how I’d emphasized their bond.

It’s in how my first born is worried that his very long day at uni today will mean I’m alone with a little sister who is going crazy and is wondering if he can do that class online at home so he can help me out with his little sister.🥹

How did I get such thoughtful children who have so much love to give in their very different ways?

I hope so hard, that I’ll be able to protect them from as much damage as I can.

(Can’t edit. It takes a lot to try be happy when your pain isn’t going and the day is coming but you’ve not slept well in way too long. Excuse the typos!)

First Part Typed Saturday Night

It was just lunges. That’s all I did before I ran out of breath and couldn’t continue exercising. Never in my life have I huffed and puffed during lunges. And I was only holding 3kg dumbbells.

It is frightening.

I even used my inhaler. But my lungs are still sore and I still can’t breathe well yet I’m sitting down. For months now, I’ve only been able to do six lunges per side. I have to strengthen my muscles. Not only because it’s necessary post menopause anyway as we lose muscle. But also because our AS bones need our muscles to not die while our skeleton does. Our bodies need all the support they can get.

But my lungs don’t want to play ball. I’ve slowly been noticing that my normal isn’t actually normal. The breathlessness I’ve experienced in the past few weeks that leaves me unable to finish a sentence or even a word isn’t temporary. This might be the best I can be. And that’s terrifying. Until my lung function test, I’d been ignoring the sudden inability to finish my words or run out of air at the last word. But yesterday I couldn’t.

I have a Bible story channel for children. It’s low stimulation, slow and steady for neurodiverse children like mine, but there’s an older girl at church who wanted me to never stop. I make up tunes for new Bible verses and yesterday, I couldn’t use the tune and beat I planned because I ran out of air before the first LINE. One little line defeated me. So I slowed it down so I could breathe halfway.

This cannot be happening. This cannot be my life. Rinvoq is finally helping my AS but my lungs, which the pulmonologist had assumed would also play ball when the AS slowed down, instead sped up. Oh, I didn’t blog that part, did I?

I went for my lung check and yikes, for example. My lung diffusion capacity had been at 17 which was slightly reduced. And then the following year it went down to 16. But now suddenly it jumped down to 13- “severely impaired ability for the body to pass oxygen from the mungs to the bloodstream.” I can’t recall the other value that also went down. But it also went down quite steeply. He didn’t give me the values.

So there we are. My lungs are misbehaving. I emailed the pulmonologist today. I asked if there’s anything we can do to ameliorate the impact of the progression or I should deal with the shorter breath. It’s only when I’m doing prolonged talking. Like when describing what a child did during a normal conversation. For children’s videos and adult videos, I talk deliberately slower, so it’s not pronounced.

I did ten lunges before I ran out of breath. Instead of celebrating that, I’m lying on my bed so the rib pain, a dizzy head and worry. And yes, I exacerbated my bone pain but that was a small price to pay.

I cannot believe this is happening. I thought my numbers would be higher! I imagined him telling me I’m now normal! At least stable! I keep thinking it’s temporary. A sharp decrease isn’t a sign of something temporary, is it?

And the worst part? My lungs remained painful throughout the rest of the appointment after my lung function tests. That had never happened before! Never! Progressing is not a good word when it refers to how a disease is moving.

Sunday afternoon now…

I had a look at my dear Amarissa’s OT report. I’d asked for them all to be assessed as the OTs had not given me any inkling on what they’re working on and I need to know what I’m paying for! I figured if they assess, they themselves have clear guidelines and know exactly what areas they should work on.

Hers was the first to come in. It is painful as a mother, to see your child sliding backwards in some respects. How does that even happen?? Why? Is it a permanent regression? And what about the ones where she didn’t improve at all? Thankfully she has improved in some areas, but only by the number of years that have passed since the most recent assessment. So when she was bine years old, she was testing at a six year level and now (for some) she’s at an eight year old level at age 11 years.

I just found myself so overwhelmed. Why does this mean? Her visual processing is as bad as it was three years ago. NO IMPROVEMENT! What is the point of ‘therapy’ when it’s not showing that it’s therapeutic? Why pay the fees and the fuel? And if she’s got so many foundational skills not where they should be, why continue with academics? Should I halt it and only focus on fine motor skills, strengthening her trunk and fingers? Should I only focus on executive functioning skills like thinking and planning? Should I only use my textbooks and forget about her textbooks? But then if I do? Her Maths and reading deficits will continue to be stagnant. But they can’t improve if she can’t see clearly anyway!

I feel stumped and sad. She can’t recall suffixes and prefixes.. the terms mean even with words that contain different types. Yet we’ve done them for a long time. And contractions. Should I even bother with that given we already know from her psych report that she will never be academic? I don’t know any factory workers who need to know grammatical contractions. Should I dump grammar completely and only focus on literature and the sciences and practical skills?

My mind goes round and round all on my own. It’s so heavy. I don’t want to shortchange her. But I don’t want to cause a breakdown over something she won’t need for whatever vocational stream she joins. But what are the options??

And that’s the other problem. I can’t find any vocational high schools that suit her. No neurodiversity profession can think of any except some high school that does more dancing and acting than what I’m thinking of, which is, building practical skills for a job one day.

And today, she’s having a very bad day which means I’m sucked into a dark malaise with her. An all day tantrum and the day is not over yet. I am worn out. How can I help my poor daughter? She is miserable, I am tired. My head is aching. My eyes are too dry for my contacts but my glasses are sliding down my face from the sweat (It’s hot)

I wish I could fix all the parts that make all my children struggle and suffer. I wish I could fix my own skeletal system and muscles and organs. I can’t and so I continue having our 11 year old assessed. This week she will be seen for an hour, and then I will meet a record four to five hours to answer questions that assess if she does have autism and PDA.

Then we discuss how to help her pharmacologically with her PMDD symptoms.

Hmmm! I don’t even know what I’m praying for anymore when it comes to myself and my children. I can hear my non speaker building up to a huge meltdown as I type. I just keep asking God to help me. And so far, I haven’t died. I haven’t had a paralysis stroke. No heart attack. So I guess He’s helping me.😅

This has been a way too hard on this body week. Not only am I still teaching even though I’m not supposed to be, but our non speaking angel was extremely absorbed in making me work my broken body.

She’s crushing me here. Lying with her substantial amount of weight on my lap. Add all the sitting I’ve had to do as I drive to various appointments, sit for various appointments, and still have to do today as we once again try to get my now 11 year old Amarissa assessed, and I’ve struggled with pain.

Also, it’s the mental strain. It is constant and ongoing. I get no rest. My children can’t just live a normal life and play typically. Normal is boring for them. They can’t play together or read for longer than 5 minutes before they either need a referee or they come wanting something from me. Always wanting something exciting aka expensive to eat or play with. And when you are in pain, you just want to be left alone to rest. With our unpredictable and violent and ‘screamy’ non speaker, I live on high alert

Alright. Now let’s move onto the afternoon of today. This post has been in the pipe works since Wednesday!

AS and sitting are not friends. I’ve taken the children for their annual weigh ins and medication reviews. We’ve added new ones here and there and sitting in the room was bad. The eyes, the mouth and throat theat become parched sooo quickly. I’d forgotten to carry water. But I also had moments of levity.

The paediatrician told Ms Talkative Twin, “Ok, Naynay, I’m going to put this here on your chest, ok?”

She replied, “Yes! If you don’t use a stethoscope then you won’t be able to hear my heart!”

😂😂😂 Busy telling her he’s using “this” when she knows full well it’s a stethoscope. He took them out his ears and said, “WHAT!?? Say that again!!”😂

While we are on the subject of Little Miss. One of her reading words for school was “globe.” She then asked for one. Could I say no when it’s educational?

She’s holding magnifying glass to it so she can read the words. That thing went everywhere with her.

Time to eat? Yep, it’s coming to join her.

Time to sleep? It’s going to bed in her room.

Globes are conversation starters…

Globes make us proud of how well our little sister reads…Globes are the world!🥰😉

And then we go back to our gripe. The pain. The sitting and the talking. I want time alone. In peace. No talking. Sitting. Just peace and quiet. I can’t wait for tomorrow where hopefully I will get it for 20 minutes or so. I can’t wait to just be. But before we talk about just being, we go to the sitting.

Today, I went to the introductory appointment for Ammy’s autism with PDA assessment. It was hell. Stupid mouth and throat drying up, pain and no escape. Bone marrow edema (swollen bone marrow) is really painful to sit on. Who knew that putting pressure on bones that have internal contents putting outward pressure on them would cause excruciating pain? And then she said she believes Ammy has PMDD. I’m embarrassed to say I had no clue what that was. But it describes my poor girl perfectly.

This is our girl to a tee. No wonder she was begging for someone to stop her cycle from happening. Though I too was begging internally. My poor girl cannot focus for school at all. It’s like she’s drunk. She sees words to at aren’t there, can’t recall what she has just read. It’s a waste of time as she is completely blank. And the rest of the symptoms speak for themselves. She’s the overrated type. And oh my, the conflict spreads everywhere and is poisonous.

And yes, we are right there in that phase right now.

As the psychologist who will be doing the assessment asked for background, all the other children’s challenges and behaviours, my homeschooling, she commented, “I see you laughing and smiling and speaking with such grace and poise, but there is no way this isn’t heavy. Special needs children are a terrible strain. You must be feeling it, aren’t you? Are you masking?”

I looked at her and thought, “And you don’t even know that I’m worried about my failing lungs, painful body as we sit here and you see me shifting around…Just parenting these children is heavy. Add parenting when you yourself need a parent to nurture you, and I’m only one step away from a mental breakdown. I cannot do this much longer. I need serious help and a break. A proper rest. Time to just be by myself. To read for myself, not for curricula and special needs. To rest my brain.” I never thought of it as masking. Masking was for autistics and ADHDers who pretend everything is ok but inside they are barely holding on. Am I masking?🤔

I can completely understand why overwhelmed parents just choose to leave this world with their children. This world isn’t made for us. It’s isolating and lonely. Depressing and tiring. Nerve racking and heartbreaking. The funny moments don’t erase the daily and nightly grind. It’s hell. I believe God will understand those parents who couldn’t live with this any longer. I will never join them, but He knows the pit of anxiety they live with every moment. And so yes, I was laughing and smiling but it’s not funny. I just have no choice.”

She has PDA herself and sees herself in the things Ammy does. So who knows? We might finally be on the way to a diagnosis that will help us help her better. And..I will need to sit through a minimum for four more hours long sessions. I am distraught. I have suffered so much this week. To know I’m far from going back to ‘normal’ pain is horrible. But a mom’s got to do what a mom’s got to do!

I have to. For these very needy angels who expect me to fill their every spare moment with new toys, new treats to eat, glue that’s running out fast, sellotape, markers Ammy leaves to dry out as she doesn’t out the lids back on.

If I could clone myself, I’d go out myself in a psych hospital and rest my mind and hospital. But I can’t. So I will end with this.

On Sunday, my ten year old son gave me a gift. He’d told me he was making me a gift when he came to ask me for sellotape and a box. Inside was a letter I could actually make sense of! In October last year, even he didn’t know what he’d written in a card to his sisters on their birthday. Here we are in February and my son’s note clearly said, “Dear mom. You are the best in the world. I love you.” Well, include the spelling errors he’d made🥰

He added this Woolworths brochure (seen above) from last year November and told me I should look at it and buy myself “anything” I see inside.😂🥰🤔

That was definitely a thought that counted, and then some! Don’t let anyone tell you autistics are selfish or self centered.

I’m in the ‘severely impaired’ level of my long diffusion capacity and my blood oxygen continues to drop. Both dropped at a much steeper rate than they had before and it terrifies me because I gave my best. I went in hoping for a stable, or even a “Your numbers are normal now!! Instead, they were so bad that they thought I needed more attempts to get re-used to the testing but all that did was cause pain in my dry throat and chest. A pain that took very long to dissipate.

We live in bad times. Diseases increase instead of decreasing. Challenges become harder instead of at least staying stable. And money rules the world. I found a perfect place for the three children to go do some movement activities or art but the prices were too high. I haven’t heard back from the homeschool mom who was offering free dance classes… Anything to use up their energy just a bit. In my absence. Let’s see what happens in the future! For now, I plead with God for a better and longer chance to just be me. To rest my bones and my throat and mouth. To bask in His love and have nothing interrupt that communion.

One day!

And yes, opthalmologist confirmed my ‘very dry eye’ and suggested plugs to put into my tear ducts that drain out so that the few years I make don’t drain out. And the rest was what I knew -drops, ointments and gels often throughout the day to avoid damage on top of the discomfort of dryness.

Haha, I have a Sister In Suffering, who regularly asks how I am, children, just life. But then said yesterday morning, “I’ll go read your blog so you don’t have to repeat yourself!”

(Note. I typed this LAST WEEK but life got too busy.)

Now now, that’s putting pressure on me to actually take this seriously! I can’t use the blog to say how I am and how my morning started. People would be bored silly reading about the day’s ups and downs. Especially as there has been more down than up given we are a special needs family and all my children seem to have executive functioning disorders! I mean, come on, my daughter who turns 20 this year didn’t make a plan to get to class when she realised the car battery was dead. No Uber, no calling the insurance guys to do a free jump start. She just reported to me while I was busy downloading videos for her siblings, and getting ready to take her non speaking sister to her annual check up!

Who would want to read about THAT? Only friends who know me and care. And that, I’ve reserved for WhatsApp as well as other “Ugh” parts of the updates they ask for about my stupid body or side effects of stuff.

So what is this post going to be about? My daughter. My non-speaker who kidnapped a giraffe yesterday. I asked her big brother to come with me for her annual check up appointment. She has never lasted an entire check up. And she didn’t. She wanted to jump of the bed when her BP was being taken but had stood on the scale for the first time, so we had a win of some sort! I’ve practiced having her stand on our scale before but didn’t think it would transfer to the doctor’s room! She stood still till she was told to get off! Well done to her!

But then she was done! Toys in the exam room notwithstanding, she was done! As the doctor came to sit down to talk with me, she was pulling me to stand up. “Car! Car!” She insisted. So I told her brother to take her and the giraffe she’d found in the waiting room basket out. But when it came time to put the toy giraffe back into the basket in the waiting room, I heard the most awful screams! I felt bad for everyone else. Then she stopped. I was surprised. When she screams like that, nothing will calm her at all. Nothing. She then screams for up to an hour and a half.

Turned out they’d felt bad for her, so the receptionists told my son to take her and the giraffe. No wonder the screams had ended so abruptly!

We did something I never thought I’d do in all my 22 years of parenting. I agreed for the paed to apply for a government school for her on the education department website. Her father had said the very awesome government special school my rheumatologist had asked at, was not “good enough” for her. Go and google Cheré Botha school in Durbanville and tell me if it looks awful 🙄But he’d never bothered to come up with a second option. He said the private school was too expensive. And that was it. I was meant to keep suffering, straining my body till it wears out prematurely and I die. This is when I knew for sure that I never mattered. When you love your wife and her doctor has even searched for schools for your children, you know she’s truly suffering and needs as much physical and mental rest as possible and you will provide it.

But he’s not a provider nor love-er for me anymore. Only for his Sandton floozy. And so, I am providing helot for myself. And that is freeing. They had different levels of disability to choose from on the website so they place your child in the most suitable school, with the more able further down the list. She was at the second bullet point. Can understand one or two word instructions. The third option was that they can follow instructions like THIS. “Can understand when you say take off your top and put it on the bed and will do so.”

It felt weird. I am still sure I love homeschooling. It’s the safest in all aspect. But it’s not good for my children who need as strong a mother as possible. And I will still have a long wait anyway. Last I checked, waiting lists for special schools were two to three years long. We still have a long wait ahead of us. For her, and for her brother.

I don’t know how to quantify my 10 year old child’s intellect. I don’t know how to show how illogical he is and how tiring it is to have to explain multiple times in different ways. To have to answer questions that not even a five year old would ask. (Why did the man wear that outfit in the music video?) Umm, because he wanted to??

Today’s one was at the lift. We were going to enter the Ground floor hospital lift to go up to the first floor where the paediatrician is. There is no basement. There is no “lower ground” floor. There is no down and no down arrow. Just one arrow. We arrived at the elevator and I asked my boy to press the button so we can go up. He had been acting nervous so I wanted him to feel empowered or able.

Except, he looked at the ONE AND ONLG button and asked, “Which button? Going up?” It takes a lot to not be “Duh? Which one do YOU think?”

We – Paed and I -put him on the WCED special waiting list too. Again, just me, myself and I making that decision. And as I said to a friend of mine today, “Divorce will wipe us out financially. (Two households single income and a sick disabled mom with special needs kids and all needing medication including the older two) So I have even less of a reason to use private schools given how much more expensive they are than government schools.”

The Durbanville government school charges R1200 per month. Private you’re looking at MInimum R6000.00. I will need the ‘change’ for when I’m free to be me, Ms Refilwe- Rose Tsukudu. At least informally. To change officially means my changing my identity for my ID, medical aid, doctors, therapists..and having a different one to my children.

In the meantime, here is our latest therapeutic toy. Both twin girls just go and sit and look at it.🥰But sometimes talkative twin also plays with it.

I’ve been making many choices and decisions on my own as the only one who knows my children’s needs and strengths and weaknesses. The most significant has been signing them up to get government education. Significant because I always thought I’d homeschool all my children forever, but here I am hoping to only teach two, and because it is for my sake because their father doesn’t care about my ill health at all. All her cares about is image. And image means private schools. But his bank accounts don’t go that far. I’ll solve my own problem instead of relying on a hard hearted man, expecting empathy and concern from someone heartless unless it’s about his mommy.

Now if only I could move OUT too!

I might as well do a whole new post instead of adding to this morning’s one.

Well, I’ve received my reply from the rheumatologist. She too is suspecting Sjögren’s disease so I’m at the pathologist’s waiting for my blood to be taken. Ahh, the joys. I’ve made an appointment to see the opthalmologist this coming week as well. I do not want to go blind. I do not want to get lymphoma or any other cancer. I will book my pulmonologist appointment now that the children are not here and needing my attention.

Sitting in a pathologist’s waiting room is very funny! I felt sorry for a couple before me. The husband had a vasectomy done three months ago and it was time for them to test a semen sample to check it worked. So he and his wife done the deed but then he did his deed into the specimen bottle. And they took it to a lab. But then they said they don’t do semen analysis. They came to the lab I was at. But they were told they don’t do it either. So now, the semen was too ‘old’ for testing. The receptionist found a different branch and had to make appointment for them and she asked if they’d have intercourse at home and then hurry to the hospital where the pathologists are or do it there at the pathologist…I wanted to shrink for them in case they felt embarrassed. The receptionist was feeling bad that she had to ask all those questions with me there waiting.😂But they needed to book a specific time to bring the sample in. So now they also had to figure out if they’d manage to wake up early enough to do it but also not be so early that they hit traffic and don’t make it on time…I know the procedure cos he did it too so I almost shouted that they must not stress, I’ve been there, done that.

And then, because of traffic and the available time slot, they had to start all over again phoning and booking at a different place and answering the same question. I know their surname thanks to that! And what they’d done this morning. Hilarious. Everyone was laughing because where they fest our blood is so open and the rooms so small and just curtains divide the little spaces.

So now we wait. Please don’t let it be Sjögren’s.

A recap of my talkative twin’s verbal feedback from the educational psychologist… Confirmation of what I’ve known. Level one ASD, PDA, ADHD combined type, hyperlexia and highly gifted. She was testing at two years eight months better and at 97th percentile cognitively and academically!!

Her only hold back is her medication! I’ve BEEN saying that! I’d already asked the paediatrician early last year to raise her ADHD meds! Her processing is BAD, 6%. And motor visual skills are worrying so I’ve asked the OT if she’s included assessing visual motor skills in this current set, if they have been working on it or not, so we can see if she’s progressed since she started OT or not. If not, then she will be child number three to need vision therapy.

The other negative is the same as Ammy. Emotionally, she is very hard on her self. She feels like she’s doing badly even if she’s not and wants to be able to do ‘everything’ even things she isn’t meant to be able to do anyway. Very true even at home. She puts way too much pressure on herself. And when frustrated she did mention that she throws things. And hits her poor sister, Ammy!

The last average skill is auditory processing. She sees and recalls much better than she hears and recalls. So that’s another area to work on. I did figure that out because of her struggles with isiXhosa and Afrikaans. She cannot hear the sounds and with isiXhosa she can’t even tell that she can’t make a click or that she’s making the wrong click.

A funny one was how she hadn’t yet learnt that ‘oh’ makes f sound. So she asked the psychologist why in the world photograph is spelled like that. Then she said, “Ohh!! Like Pharaoh!”

She is also very nurturing and caring. Very sociable and actually too sociable and needs to learn not to be so open and loving with people. Very worried about my being sick.😞Wants to take care of people. Exactly what we see here at home. She even told me the other day, “Here are some letters we made for you! Mickey’s doesn’t look so good and I don’t know what it is, but I told him he did a great job! I don’t want him to feel bad!” My heart!🥹🥰🥰

So man, if we work on her visual eg. Skipping down to a different line instead of completing a line when reading, upping or changing her ADHD meds, so she can focus, we will be doing super! I’ve never had a gifted child before. I do know they need extra so they don’t get bored! That’s why she keeps telling me “it’s ok” that the “maths is too easy.”😂🥰

There’s more that I can’t recall that I told my friend just now who asked how the children are but these are the things I recall. I began typing before she asked me.

Regarding performance, she also did the same as she does with me for school. She got up and was pacing up and down, flapping her hands when excited, spinning and dancing BUT still focusing on her work despite all the busy-ness. I love it. She does so many strange things like getting off her chair and sitting on the floor, or singing her work or facing the back of the chair with her legs over it! But she is still working!

I’m so relieved. She will need extra time and struggle with high pressure things like exams, because of the pressure she puts on herself to be perfect, but she is super intelligent!! Highly gifted! Just like Vi and I have BEEN saying. And that means, more opportunities for her future if her ADHD doesn’t trip her up.

As the educational psychologist said, if she was someone else’s child, because she’s so clever, she’d have burnt out around grade 4 when she usually sees them, been told she has high anxiety and then been diagnosed as autistic at age 40. And then all the masking she’d have done and having to handle the mental load of being autistic while people assume your brain is neurotypical like theirs and so they expectations are high would have burnt her out. Nobody would have known she has sensory issues. Nobody would understand how desperately she needs her bunny to soothe and regulate her so she can focus on her work…

I will buy a weighted lap blanket for when she’s doing school. ADHD is hectic. Hers is severe. BUT, her cognitive skills will help balance it out. Like when she takes a while for her working memory to work for memorising counting in two’s, so I bought a poster with the different types of skip counting and she looked at it, sang it and then randomly recited the numbers to me, telling me she had been practicing them all along. The recommendations for that were what I’m already doing so it’s going to be cool!

It’s weird, coordinating with these people all on my own. Going to do blood tests with only me worrying about myself. But my sisters are just a voice note away and we will carry each others’ burdens.

Have a lovely weekend, all!