Tag: adhd

My Gifts!

Grace by any other name1 Comment

This little guy was wearing crocs and his pants and T-shirt. He was miffed when his father asked why he’s dressing more and more like a gangster these days. So, to solve the problem and NOT look like a gangster, he changed from black crocs to these olive green boots. “See!? Now I don’t look no like a gangster!”🫣

I overheard him telling one of his little sisters, what his father had said as I went in to check how far she was with getting dressed. (Not very far at all! She happily says she will get dressed but then tells you while holding her top , that her wolf pooped all night. Then there was a fox which also made a mess…Then the top gets thrown on the floor. You apparently can’t multitask dressing and talking. So the dressing falls by the wayside. The distractability is insane!)

She butted in, “Daddy say Mickey looks like a gangster?” And he chimed in, “Yes! So I changed my shoes, and now I don’t look like a gangster. (Hmm)

Mom..what IS a gangster?”😂😂😂🤣🤣🤣🤣

His irrepressible five year old sister told him, “It’s something bad! They rob people!”

Ahh. My morning giggle outweighs the fact that their other sister woke before me and was loud so I was unable to study my Bible nor do my discussion of a lovely book called The Desire of Ages with my friend.

This girl MUST have restless feet syndrome. She never ends up in the morning, the way she has been put to sleep! Her duvets and comforters are always diagonal, or falling off, or like today, rolled around her shoulders!

We had a shaky week but she has woken up happier. She came in crying at 3am, shaken to the core about a nightmare in which I was having seizures. I hugged her tight, she thanked me for helping her, I asked if she thought she could sleep again, she said yes.

When she awoke properly, she told me how she’d been in the house in the nightmare. Her father had told her to tidy her room. And then I came talking to her and carrying laundry but as I was walking, I started shaking uncontrollably and was foaming at the mouth. She screamed at me to stop working and lie down but I kept shaking and carrying the laundry basket and foaming.

Poor girl! I hugged her again and told her that I would pray for her to have an awesome night. She asked me again if I’m sure I’m not dying. I told her I don’t have any problems that tell me I’m dying soon so she must not worry. I prayed with her, prayed that she have a beautiful dream that will make her so happy…

Next morning was so different to those hiccuping tears.

She dreamt we were in a garden together, taking a walk. She asked if she could take one of the squirrels we were seeing, and I said no. As we walked and admired the beauty, we came across a rabbit. She asked if she could take the rabbit. And I said yes. And she was HAPPY! Whew! I’m relieved. She has gone through a round of nightmares and I hate that for her. I’m glad this was a once off.

Sabbath means treats! I had asked their brother to buy them Oreos but there were no boxes so he bought those little packs that only have four in each. And not four of a kind. So there was a mini sulk because one didn’t have the same as the other three. Until they realised they could exchange! Two golden, and two original! They came bounding in as I prepared their Nature lesson and were excited to tell me what they had figured out ON THEIR OWN!

What made me laugh was my dear five year old asking me, “So..How do you FEEL!?”

Hahaha. The correct answer could only be, “I am very proud of you for working together!”

Our girl doesn’t really use words together with actions. She has said the word ‘up’ when she wanted me to pick her up. But only once. She only names foods if they aren’t within reach of her to pull you to them. But this week she was splashing in the bath- splashing water out and truly enjoying the splat sound on the tiles! That’s soooo cool. A new way to entertain herself, guys! Later, as she played, she threw the water up and as it fell down, she said, “Tumbling DOWN!” She also whispered “Splash” after I had said it and then got louder and louder the more bath water she threw out the bath. It was like a little baby realising what water can do and playing that “I’m going to throw this down from my high chair so you have to keep picking it up” game. It was lovely! We needed two towels to soak it up, and she splashed poor Vi, but oh, her happiness made us both happy too.🥹And of course, the words that came with the actions were an added bonus! Just like watching a baby learn cause and effect.

I therefore sniggered today, after her town was referred to as baby, and she when her said she and our ten year old are big girls, she is not a baby! I asked, “But what about Ella? She’s 19. What is she?” Naynay confidently replied that three of them – five, ten and 19 years old are big girls BUT her twin sister is a little baby.🫣

With that understanding of her limitations, comes her solicitude towards her only two minutes younger twin sister. Hugging her, allowing her to get closer than she would allow US, not being irritated by her being close to her vs how she gets angry with her older siblings. It’s sweet!

And one last bit of sweetness. Thursday evening they went to choose treats. There was an elderly woman who saw them at her till while they were at their till. She waved at them, and they then took that as an opportunity to go to her, talk to her and “give the African granny a big hug! She said we made her day!”🥹

We have no idea what little gestures mean to others. They are extra sweet to the granny they meet at the playground too. Ammy shows they are a blessing to her because she lives alone, so at least they get to give her some conversation.🥹

There was blonde lady I once shared about who smelt me while in a shopping queue. She came to tell me I smelt like her late mother’s perfume and that it made her melt. She needed it. If smell can do that, I am sure my little ones are doing the Lord’s work for the elderly.

Those are my gifts. My special children with golden hearts. Hearts that woke up happy this Sabbath.

Long Live Mom, Viva!

Grace by any other name2 Comments

(For context about my principles and faith, and what my husband and I used to believe together, picture the most conservative Muslim couple you can. Do they show their arms, legs? Do they were tight clothes? Do their children do swimming or wearing typical western gym wear? Do they admire gymnasts or ballerinas or go watch them? Do they hug members of the opposite sex? That is who we were. That is who I still am.)

My friend has observed a few things. My ten year old daughter, Amarissa, has observed a few things. This very evening she asked me in front of her dad about those different principles she’s noticed in her dad that made her ask if I’m more Christian than he is.

See, years ago, he used to teach that racing, running against other people, etc aren’t necessary. (As taught by our founder. Probably the same principle as the Jehovah’s Witnesses’ no ‘competitive sports’ rule.) His whole theme was that in the God game, there are many victors and nobody feels anyone is superior in strength, power, ability etc. And as my oldest said last year, “What I remember so clearly, is dad asking the church if they could ever imagine Jesus in His long robes taking part in a running race, or in a soccer game.” Paul also taught against vainglory, emulation but rather about being helpful and viewing each other as on the same team.

As a lover of our founder’s writings, I still live by those principles. Unlike my husband, I don’t hug members of the opposite sex. In terms of earthly relationship, I put our family first. He puts his mother and siblings first. (I left and cleaved) And so, with all the things she has noticed, my girl asked in front of her dad, if I would join him in a race if I was well. I told her, “ No WAY!!” I have better (nobler) things I could be doing. Things that are still exercise but not in a competitive spirit and more importantly not surrounded by males who are immodest. If you believe it’s wrong, you’re not going to choose to be in a sea of it.

She then asked if I agree with her dad for running the races. Again, I said no. She then asked how we (She and I!) will stop him. Her first suggestion was to “take his money” so he can’t pay the entrance fees for these marathons. He then asked if she’d seen him pay anything this year. I told her his foot was sore so that’s why he hadn’t done a race this year.

A friend had remarked on this discrepancy amongst other issues that are different from what used to be taught by him, (Which are sadly, the things that drew me to him as a godly man of our faith) and she said she hopes I don’t die else our faith would die with me. I had to hope along with her.

See those fluffy pyjamas in the photo? Pathological Demand Avoidance (PDA) is extreme anxiety that sees the person needing to exert some bit of control over their life so they don’t lose their mind completely. The first and major thing you’re taught as the caregiver or partner of one with PDA is to give them choice. Make them feel as if they are making the decision.

Instead of my saying, “Nalo, here are the pyjamas you must wear” while her ADHD brain and body dawdled with getting undressed to bath, I asked her if she wanted any specific pyjama. She grandly told me as if conferring a hrest privilege upon me, “YOU can choose any. It’s ok. YOU can decide.”🤣

No crisis. No being made to feel powerless and even more out of control. No anger. No sadness. No telling them what to do. Letting them choose. Letting them ask for help if they want it. And giving freedom for things that aren’t important. Like them rearranging their bedroom without asking.😆

But dad doesn’t get it. Maybe he doesn’t know how to speak and ask. It’s not like I myself ever feel any tenderness in speech so maybe it’s just not possible for him. And children are fragile. So to have dad come out the room and he’s immediately barking instructions while the children are busy with something else, “ Go tidy up your room. Now! Go!” does NOT work even for adults. We want love. We want to be seen and valued. We want to know that you care how we are instead of the first greeting being, “Go tidy up.” Now especially as children, and children with ADHD nogal, is there a need for understanding why the room is in a mess, for checking what they are currently busy with, and suggesting that in X minutes, the floor being made tidy… Then the bed… Like that. They need directions one at a time because it’s overwhelming to get there and have a mountain of work. And because you have executive functioning disabilities (planning, coordinating, decision making…), you truly have no idea where to start so your brain freezes or panics and gets overwhelmed and your body does nothing.

And tone, for PDAers is everything. It’s the difference between peace and a huge meltdown and feeling like you’re hated.

And so, I don’t want to die. My friend doesn’t want me to die. And my children don’t want me to die. But I didn’t realise this was a FEAR of theirs till today.

Amarissa has harbored a fear all this time, that I’m hiding my impending death from them. 💔🥹She asked today if I’m sure the doctor didn’t tell me I’m dying and I just haven’t told them. This was after the three of them thanked me for their breakfast and then as I hugged them, she said it. “Are you sure you’re not hiding that you’re dying? What did the doctor really say? Please don’t die.”

I told her that according to my tests, I’m not dying. (Kidney function only went down by two units. Still waiting for test results on the pus she swabbed that was still coming out the abscess. Rheumatologist is scared the GP’s antibiotics might not be treating the right pathogen and it could be some other bad one so she dug inside and took some pus to send for testing) I told her I must still use my inhaler and she knows I am, so my lungs are not any worse. So no, I have no knowledge that I’m so sick that I’ll die any time soon.

So now I have a few more mom reasons besides being the only one who knows their school status and vision therapists and OT and exercises. To help keep the children seeing in living example what I read and study with them, to be their safe space, to understand their varied conditions and the best way of making them comfortable in a world not designed for children like them.

Abscess pain still there. Still no Rinvoq till I’m done with my course of antibiotics so the nights, pain, stiffness are getting even worse. I woke with my neck and head so sore I could barely see from when I woke up permanently, till maybe two hours later. (Don’t ask me how they are linked) But I can still love.

But hey, I have an ally! Our helper told our girl that she should go with her to Malawi when she goes to see her children so that I can rest. As you can tell from the video below, she’s the chief instigator of all the mayhem. So, not only physical rest from her wet bedding, school work, finding urine deposited in random places, (It’s a thing. Many of us moms in the ADHD group lament but have no real solution) but mental rest too. She came in at school time, “Mommy? Can you believe what Aunty Violet said? She said she will take me to Malawi so you can rest! And then when I’m naughty, she will send me to a FARM!! No way!!”🤣

Ahh the joys! It honestly is HARD. The number of anonymous parents sharing their despair in the groups and it’s over the exact same things I live my life despairing over is heartbreaking but so helpful. We’re all at see. If we were to tell what happens every ten minutes, people would accuse us of what a certain mom was told when she dared to TELL THE TRUTH about her ADHD son.

“You complain so much. You clearly don’t love your son.”

It’s such a prevalent response that even if I had anyone who asked how my parenting day was, I’d never tell them the lows and lows. You see it on disclaimers tired parents give (And don’t forget our non- speaker who is absolutely miserable today and I have no idea why. We’ve done all we can. Taken her on multiple drives, given pain meds, given extra to eat, let her watch jumping dolphins. She attacked me earlier for not discernible reason. Those too are things we don’t bother sharing because only those who live it even think of it as a possible part of your day, and because it’s again … Who wants be reminded that life can have the joy sucked out of it in different ways every half hour? Like my daughter’s eye lid cyst which is NOT gone despite surgery? It is on and on. Your heart resides in your children and when they are miserable, so are you.)

I digressed! I see it so often with mothers and caring, hands on fathers, “We love our son to death, but we are tired. He doesn’t listen to anything we tell him. It’s just fight after fight and my wife and I were left in tears last night.” 💔

What a life. And I’m meant to outlive the very ones who do bring joy, yes, but oh, so much heartache. So much money gone. So much time. And so much thought. I only had ‘breakfast’ at 15:00 today and that was meal one of the four I’m meant to have before each two capsules of antibiotics.

We have to live long.

But nobody takes care of us so we can care for our children in a healthier physical state so we can be strong when they are weak. (The irony of that sentence with an AS diagnosis.)

All of us are survivors or surviving. Long life to us and here’s to a hope of better.

Small Smiley Things

Grace by any other nameLeave a comment

The range is actually 30-40% delayed thinking, functioning, planning, memory, organising… I believe this. Especially for my older two who amongst other challenges, have moderate to severe ADHD. It also matches the outcome my ten year old had after an assessment. Her emotional age was six years old yet she was ten. I hope it helps any other person out there to understand why their child is being more childish than they ‘should’ be. Why they lack common sense or logic that ‘should’ exist at their age. Obviously, some aren’t as lacking, and some are even more behind than 40%.

(ETA doing the hair of ADHD kiddies is an exercise in patience. You see other children absorbed in their tablets or iPads. Mine are absorbed. They recite what they’re watching. Especially Nalo. “I e is ie for pie.” She knows every line coming up. But they still move around soooo much. Given they cut a lot of their hair. We had no choice but to cut it all, so it’s SHORT. Trying to grab a hold of short hair is hard. Add a child who just as you have it, then sharply turns their head merely to see what the other is doing on their iPad even though they can hear it… (And yep, they all broke their noise canceling headphones. Even my poor son who needs them the most.)

Now, onto the smiley things. The things that make me smile!

My boy is the girls’ personal butler. His five year old sister used him the most.

I was working on closing the ends of wool journey. Haha, I call it a ‘journey’ because as with my locs, I learnt online. Someone coming here for just one head would cost R1000! Imagine all that money! Impossible. I’ll save our hair products myself. The girls kept finishing our sprays and moisturizers in one week or less. Breaking lids and emptying contents even onto the floor. And they creep into my room to get them even when I try hide them. It was constant “Let’s go to the mirror and comb our hair.” And they’d hate starting their school day because they hadn’t litter their hair to be puffy. Cue, the jumbo box wool braids to stop the madness till we can (for the THIRD time, resume locs and hope that this third time will see them never cutting their hair again.)

That was a much longer paragraph than planned! I asked him if he’s HAPPY that Nalo keeps asking him to make toast with peanut butter for her. Their appetites return with a vengeance after their ADHD meds wear off, so evening is hunger time! And my sweet boy goes up and down fetching bread, peanuts and raisins. He said he LOVES to feed his siblings. Ammy is a bit miffed. “Why him? Does she like HIS bread the most? Why doesn’t she ask ME?”😅

Another smiley one is our non speaker insisting on her older sister using her tablet in her wardrobe. Our schedule includes breaks where they each get their tablets and do educational apps or watch educational videos I’ve either created for them, or have downloaded for them. It’s been months of this. It’s crazy but cool. And her sister is totally happy with it. We all need some darkness and calm.🙂

The last smiley thing is Nalo’s absolute joy of learning. I posted two or three little snippets of our one class session. Besides thinking about her work, her brain (AuDHD) is running in multiple directions. I hear, “I love you” out of the blue and she tells me ‘completely unrelated to school or to the topic’ things.

But what was made me laugh was when I came out the bathroom and she proudly showed me all the pages of one of her reading books that she’d read while “waiting” for me to come out. I don’t know if she’d the right judge but I’d like to believe she did read everything correctly. 🙂 I truly hope she never stops enjoying school.

The First Frisson of Fear

Grace by any other name2 Comments

Haha, I was looking for a picture of a skeleton and this one reminded me of first year speech therapy and audiology. We were each given a human skull to take home or to res to keep reminding ourselves of the bones of the inner ear etc. My husband-to- be thought I was creepy. I didn’t even think about it being human. It was more real cutting open the corpses in the hospital basement. But even then, I just wondered if the corpse I was working on was one donated specifically for us to cut up as some people do (Leaving their body for research or students) or if it was the corpse of an unknown homeless man whose body was brought in for students to mangle learn on. Those were two of the main places the university for corpses from.

Back to why I’m posting today. The chronic issue that gave rise to the name of this blog. I am starting to feel my skeleton and the first frisson of fear has begun. Unlike Enbrel which started working on my AS symptoms after four months, Rinvoq started in the third week. And the difference was much more obvious than with Enbrel – until the flare started last week. But even then, I didn’t have the usual, “God, this is no life. Please kill me,” request.

Until today. In the same way Rinvoq works fast, if you’re just an hour later than normal, your body starts acting up. Now it’s been three doses missed and the cystitis symptoms are still there and instructions from the rheumatologist were clear. “Do NOT resume the Rinvoq until all symptoms are gone.” And they’re not. I still have the pain. And honestly, I wouldn’t want to take it until I am healed. Who would want to change a hopefully easily treatable situation into a potentially kidney function threatening (As if my kidney function needs to get worse as it is), if not life threatening, situation?

So, I wait. But, as I just told my mother in rural Zim who asked how I am, my bones are crying now. I am in extreme pain and the fatigue has returned. Even my sternum is reminding me it exists. My children obviously see it because they kept telling me to go rest when I was tidying their dishes and plates up.

The new fear doesn’t end there with just the fear of an infection that won’t respond to the first antibiotic and will need longer treatment. Remember the ‘many months long’ paronychia when I was on Enbrel? WILL this infection heal soon? But also, what if more infections keep coming and it turns out I can’t keep using Rinvoq because it might kill me, like the way we had to stop using Enbrel? I’d be bereft. This has helped me more than any other attempt.What if the next infection damages more of my lungs? What if the next treatment attempt after having to quit Rinvoq will be like Cosentyx? Useless to me?

As I said, never in my life do I recall having cystitis. I just knew I had it because of my symptoms matching it, not because of experience. The test just confirmed it. By the way, I’m thankful for Intercare that always has appointments available to book online for the following day. I’d also never had a paronychia till Enbrel.

So now, I actually have to pray about these extra possibilities. All along, I’ve been masking up to try avoid those kinds of infection. But as the finger and now my bladder have reminded me, there are infections you can’t prevent. Enemies you can’t predict. Things I don’t think of as threats when I’m praying to not catch a cold or flu. And now my minor blood pressure worries have truly become minor. I guess because I knew that there are anti hypertension medicines but there’s no other way but to stop if I keep getting sick.

And with the improvement I’d started to feel, that’s a big problem. My daughter even asked how I keep making my bones crack when I get up. She thought it was on purpose! Like when people crack their knuckles. I wish!

Ankylosing spondylitis has reminded me who’s boss. It’s still that same incurable, progressive (ie it gets worse or treats you worse as time goes) inflammatory autoimmune disease. As if the leg that’s permanently painfully limping if it has to walk for over two minutes straight or try to exercise wasn’t already reminding me.

Chronically Yours signing off.

The one whose club you don’t want to join and to which if you belong, you wish you could get out of.

And don’t forget my children. My ten year old said she has always remembered my telling them never to play with fire. But, she thought the BLUE flame on our gas stove wasn’t fire. She touched it. It hurt. She was surprised.

She’s turning 11 this year.

As I’ve said. I need many of me to watch them and keep them safe.

My heart sank. At least she’s stopped self harming with needles and scissors. But yes, this life is extremely unpredictable and WORRYING. Their angels are working over time to keep them from permanently leaving this life. She’s promised never to climb up here again.

She can’t ever struggles to keep her promises.

Hmmm

I Know what I Want for THIS Mother’s Day(s)

Grace by any other name2 Comments

I want to do more! You know how it is. All the things you want to do and only remember when you’re busy with something else…

Like noticing how untidy the garage is when you’re busy hanging damp washing in it.

As every mother knows. Well, mothers who don’t have live in nannies, that is. As every mother knows, mothering is your calling and job. So when you have four little ones with autism, ADHD, intellectual impairment and nobody else to talk to and plan activities for them, you don’t have time to do those things that irritate you.

Add active AS, and you don’t really have the ability to fix those things that irritate you either.

So what I want is to go into remission. There are people in my Rinvoq (My newest treatment attempt) group who are in remission. That means no pain whatsoever and they’ve almost halted the disease completely. The CEO if the large retailer, Shoprite said in his book that he’s been in remission for 30 years!! And he knows that when the AS starts being active again, he can find other treatments. I can’t imagine having no pain for the next 30 years!! By then I’d be 75! Better now than never, right??

I want to stir food and not be in pain. I want to lift light shopping and not have my husband ask what’s wrong because I forgot he was there and so didn’t hide the grimace the pain in my shoulders put on my face.

So I tried to do one thing I wanted to do.

I put the kiddies to sleep first. The first one to go to bed is this non-speaking angel who threw a very tiny fit because I took her for a drive that was too short. (third drive of the day) I put their soy yoghurt, peanuts and raisins and peeled and separated tangerines on the table and RAN away so she would not pull me. She stopped her half hearted crying! And by the time I came back out to finish off medicating them, she was happy again.

This was sent to me last Friday when I was hiding from having to do the second drive of the day. (See a theme?) She did the arranging of the soft play therapy toys plus her now too small car seat on the treadmill ☺️☺️

I want to enjoy more of that. Her crazy creativity and moments of peace.

I got a lot of ‘crazy’ tonight. She was in her room laughing and laughing on her own! For 25 minutes straight, my girl laughed and laughed! Then she slept.

The next to go to sleep was her twin.

I set up her electric hot water bottle, turned on her walk heater, tucked her in and told her I loved her.

Two to go.

I forgot about their meds. I hope their dad medicated them. I got busy! But I did give my ten year old an activity book to do before lights off. Then I went…

And I’m now lying here putting my hot water bottle on my very sore shoulder and then putting it on my lower back. All because I did something else I’ve been wanting to do.

I went to the garage, knowing I’d already done grocery shopping and breakfast and lunch. And knowing I should therefore REST! But then, the washing was getting damp in the waning afternoon as dew fell on it so I had to drag my sore body out.

And then I saw it.

The thing I always want to sort out but only notice when I’m busy with something else.

The garage

I focused on this area with the box full of damp books. Damaged books. Damaged by the children. And broken toys and some that could be salvaged. I took all the moldy books and papers out to the fire pit outside. Threw away all broken prams, flat balls nobody uses, all of the stuff that irritates. Kept the dirty cups for sand play. Sorted the “stuff” out. Typical and normal night.

It was fun. Earbuds in so I could listen to music without having my son (Who always comes on the drives his sister asks for) asking me what this word means or asking what language I am listening to while I’m trying to sing along.

I want to be able to do this every day, and not suffer afterwards. Not to have to choose between putting my hot water bottle on my shoulder vs on my lower back. I want to be able to work and know that tomorrow, I will NOT be in worse pain.

I want to be able to use the extra energy Rinvoq has given me without fear of what using that energy means to my pain levels.

I want to be much better.

I want to be able to do all the movement activities I plan for the children but don’t get round to because teaching and doing vision exercises are too much as it is.

I want to be a mother in the way I used to be. I want my day as a mother to be as full or as empty as I choose for it to be. I want to stop doing something not because if I do more then I’ll be in worse pain for more days, but just because I feel like I’ve done enough.

For now, I’ll be thankful that I at least had ENERGY to get rid of everything in here and that was in front and around it.

But I want more.

Is that too much to ask?

But also, I want to be thankful that most nights since I started this ‘not so good for my heart’ treatment, I’ve slept better than I have in 40 years. Counting from when the bone pain the GP said was “just growing pain” started keeping me up at night.

I want to acknowledge that somewhere in this horrible world, there is beauty.

WHAT Sabbath?

Grace by any other name1 Comment

I used to dislike hearing people say, “Happy Sabbath” when greeting me at church. I’m not worshipping for happiness, to feel good, but for blessings that will help me become good, holy, pure in God’s eyes. So I’ve always deliberately said, “Blessed Sabbath,” or, “I hope you will have a blessed Sabbath.”

Nothing strips you if the FEELING of being blessed as pain. Emotional, physical, both types. If you aren’t resting from negative experiences, you don’t feel like it is a Sabbath. Sabbath is meant to bring us closer to God and further away from the earth’s charms and harms!

But not when the devil has your health and your children firmly in his grip. You feel as harried as you would on any other day. Yes, you might not be “doing school,” but you’re still teaching. And AS, ADHD, Autism and intellectual impairment and everything else, have no day of rest.

And so, a day which began with some hope has not ended yet *gulp* , but has come with some hard moments. I’ve been warning my ten year old, our helper has warned her, but still, despite us telling her to stop touching and catching bees, she got stung yesterday. And her finger is still sore and swollen and red at the tip. Normal, but it’s the fact that she caused it that makes it worse. I don’t like worrying about my children. It takes away my peace. And knowing it was by choice sadly doesn’t make me STOP worrying or being sad about her (according to Google) few days of suffering.

The teens have been here for almost a week now. I had THOUGHT I’d be able to take the children to nature on Sabbath last week but my body said no. And it’s still saying no. So I told them they could go wherever they’d like and so it was, they went to the aquarium.

After doing some Bible reading, I felt in a hurry. We took a short walk. And that too is a big deal. We used to take walks in the evenings when my husband is around when the children were calm- twins in bed and middle two reading or playing calmly. But now, there are no teens to watch over them in the evenings or on weekends anymore so we’ve been stuck at home. I could walk alone, but I feel like my limp when alone draws too much attention to me and I feel self conscious. And it’s not like it’s a power walk for exercise. Just a short gentle stroll. A third of the distance I could walk two years ago.😐

Back to the point. I was feeling rushed. We just had a few moments of ‘peace’ till the group returned. I came back home and settled in, trying to finish as much of their nature story as I could. But they arrived before I had finished.

And that is the crux of the matter. Two hours isn’t enough to give true rest. Because of their peculiarities, one twin pulling me when I sit with everyone, the other not focusing well when I’m teaching face to face, I have to then record their videos. Edit them, find engaging pictures. And then put it all together. So I’m sitting.

Pain.

They returned from the aquarium. And chaos started. I went to go warm up lunch and dish it out and my girl began, “Car. Car. Kayi. Kayi.” (Don’t know how the vowels change.) Her dad always says we should say no. After all, they’d gone all the way to the CBD to the aquarium, it’s enough. Nope, not for her.

So I went to hide at his urging. But the girl wanted her car ride come hell or night water. And the loud tears began.

Ten minutes later, I gave up. My driving leg has been giving me a lot of trouble. But I couldn’t handle the fact that SHE was unhappy, and everyone (perhaps excluding her father who was saying no to the car ride) else also had to be party to it. I needed to make things better for the other children.

So I took her for her drive.

Calm restored.

But not my own.

For just an hour after that, I found a mess that didn’t make sense at first. Till they told me they’d been melting crayons with hot water. I know ADHDers are creative. But at this point, I wish all their creativity was in a positive direction. Not something resulting in MORE work like their little sister’s brand of autism results in. How will I even begin to clean this?

And this is the crux of the problem. My body doesn’t allow me to be watching over them wherever they go. And I have to parent and teach, feed and launder. I can’t follow them outside to ensure they don’t get stung by bees. I can’t drive all the time. What happens when my joint on that burning bad right leg is fully fused? Or I’ve caught an infection I don’t want them to catch so don’t want to sit in a car with them? What happens when I’m in an even worse AS state and can’t drive her anywhere? How will she and all of us handle her screams and cries? I can’t be hovering over them to make sure they don’t melt crayons. I can’t do it all.

And because I can’t do it all, lots happens that definitely does not feel like a blessing. That short break I got when they went to the aquarium didn’t feel like one at all. Because I was still giving my body to my children. Not by choice, but because their special needs demand I record so they can learn.

I feel like the strain is aging me.

Today is definitely not FEELING happy nor blessed. It’s stressful, PAINFUL and sad. My pain levels are increasing. Even at night I dreamt I had fused up and was planning surgery to break the bones and fuse them in a better position.

Nevertheless, I keep on. What else can I do?

Stolen Money

Grace by any other name1 Comment

I am desperately trying to find educational, or more importantly, therapeutic centres for my children. Places where they can wear what they need – instead of being bound to a uniform of specific lengths and material.

I am desperately trying to figure out how in the world next year will look. Paying for two university students is no joke. We have no clue how that will work. Paying their mortgage for the townhouse we bought them in a secure complex- how will that work out from our budget?

Oh. No. Let’s go back.

We haven’t bought an apartment. We tried to buy scammers stole our deposit!

The ‘estate agent’ sent through the correct offer to purchase documents showing that the seller had signed after we signed. And sent bank details for the documents.

Only the next day when she asked whether the deposit had indeed been paid did my husband notice – when she again sent proof that she had sent the bank details so didn’t understand why we hadn’t paid-that her email address was not correct anymore and neither were ours. The thieves had swopped a letter here and there so it looked ok at face value. But it wasn’t ok. The money had gone into their account.

This was last week Thursday night and we are still waiting to find out if we can get our money back. He went to sign an affidavit with the police. Then got a case number and the agents have done their portion and have spoken to officers on their end. And now, we wait. The bank knows.

So let’s PRETEND the purchase has happened. How will we pay their mortgage, our mortgage, their pocket money, grocery, laundry soap, crockery, cutlery, etc etc , internet, university fees, car repayment, car insurance (We’d hoped they’d each have a car but they’ll have to share) and all my medical costs, the kids’ medical costs, anything that comes out of the blue and our own fuel as well as the teens’ fuel costs and all other costs?

And that is why I am stuck.

I can’t afford to hire a proper au pair. Those people charge an arm and a leg. Might as well be sending two children to an expensive learning centre- something we already can’t do now, even before the teens’ leave. I can’t pay rent for someone to live close by and also give them a salary to be my assistant teacher, to be my children’s supervisor and watcher and nappy changer and bather. And I can’t build a granny flat in the yard because that too is too expensive. We would have little to eat, and nothing left for my medical needs.

I am stuck.

So, so stuck.

The only thing I can do is cry out to God. I’m in abdominal discomfort from the colonoscopy and gastroscopy. And I’m tired. So, so tired. The screaming, the pushing, the pulling, the soiled toilet seats soiled by an almost ten year old girl, the screaming, the nagging, the sentences I must reply to even though I know they won’t even make any sense so I won’t be able to answer them anyway. The constant busy-ness, the planning, the recording, the sitting, the pain from sitting and recording, the editing, the lack of time to get everything done in 24 hours and still sleep. The pain, the limping, the heartache at each child’s specific problems, the wondering, the anxiety, not knowing what to aim for, planning for more assessments, appointments, traveling, fuel, knee pain, hip pain, fatigue just from folding a t-shirt, arms too tired to fold more. The ironing, the picking up bowls, more bowls, cups, cups inside, cups outside, the laundry, more laundry, bowls in the garage, bowls on the grass, spoons in the drain, toys on the trampoline, socks missing partners amongst the flowers, sharp knives mysteriously found outside, crying, bowls on beds, split raisins, spiky milk, hidden old food, money food hidden in my car, pulling, too much eating, worrying that our non speaker will die from obesity related illnesses, fear that she will kill me one day, hating that I can’t take all the children out because she spoils their joy, hating that I can’t take any children out anyway because of my body.

Toilet. Can’t use the toilet in peace. Teen son comes to ask. Talking twin daughter bangs and screams. Shouts and cries. Non-talker screams and cries and if I dare forget to lock and I’m in there to use the loo and make a call in the relative quiet of the bathroom, she comes in, pulling me, pushing me, then giving up and sitting (very heavily) on me..on the loo. Open the door, children waiting and waiting for me. No peace. Night means research, planning, preparing, editing, recording no, reading aloud, searching for extra to add…

Hoping..hoping the children get back safely from their nature trip. Sad. Unseen. I have nobody here to speak to, cry with, plan with, seek help with, hug me, comfort me, pray for me, wish things were better with. I have to be strong. I’m the only mother, the only parent they have most of the time.

I speak out my fear of the future to an adult in the house . “They won’t be like that.” I get told And I think, “ They are already like that now! But I’m the only one who lives it day after day after morning after afternoon after evening. Can anybody hear me!??”

I am sad.

But I am never going to be broken.

The same woman who sent this message below when I cried out into the ether, is one who too will never allow herself to be broken by any human out there.

I may never get any rest while living on this earth. But I know who will be extremely happy that heaven has come at last and I can finally have the rest I never received on earth. One who will rejoice with me and for me. One who feels for me with all her heart and soul.

I am sad. But I am not sad alone.

I am thankful for technology. And I know that unlike many who make empty promises, this message writer would deliver, because even without making any promise, she just gave. Freely, willingly, of the VERY little she and her precious family had.

I’ve had people not only love me, hear me, but also care for me, sacrifice for me. Cook for me, walk at nine o’clock night to go find something, anything that would stop the violent post-op vomiting that wasn’t stopping.

I used to ask God why He let me give so much- time, energy, prayer, thought, care, worry, money, my own clothes off my own back, food, blankets- yet never receive the same love. What was wrong with me that people could use but never love?

Nothing.

He was just waiting for a time when I would need it the most, for a time I’d appreciate it the most, when words would be just as heartfelt as actions. That time is now. I am on my knees. But I’m not alone.

Prompted by a comment

Grace by any other name1 Comment

How are things going with my not very predictable, and very physical daughter? This post was prompted by a father of an autistic child who commented under the post in which I spoke snot my daughter hitting me and hurting me.

Sometimes good, sometimes bad. She has no real texture she prefers anymore. She will eat porridge-y Pronutro just fine, and oats. And sometimes..not. Today was one of those “Not oats” days. She came into the house, saw the oats on their table and came storming to the kitchen yelling angrily. I knew what that meant. This time poor Micaiah who happened to come into the kitchen got caught in the crossfire for the first time (in my presence. ) I didn’t know how he’d react when I was telling her to be kind so didn’t even have a chance to warn him to rather stay away instead of getting close. But, it ended ok. Well, it ended ok for him. He left and then when I replaced the oats with original flavour Pronutro-which she keeps gesturing for-she knocked the bowl out my hand and cereal went flying.

I’m sorry the camera glitches so you can’t see it all.

This is what life is like here. Not ALL days, but MANY days. I will need someone to be nanny who understands the unpredictability but will remain calm under fire. I think of a baby who was hired by a lady in a South African homeschool group. She took a month holiday and went home and they had a sub. She wrote to tell the mom that she misses her autistic son who is so loving despite how often he hits her. I’ll need someone like that unless I miraculously find a very affordable therapeutic centre for her. If we lived somewhere like in the States, I’d definitely have an aide for her and send her to one of their special schools. But, I’m here, not there. And we have nothing here. The government only even starts putting our children on their two year plus special school waiting list after your child turns seven! AFTER. And the waiting list is long! Can even be longer than two years. It’s BAD. I really don’t know what to do and am constantly stressed to the max. I’m struggling.

Then we come to the middle two. I’m meant to brush their teeth. And I’m starting to struggle there too. Just folding laundry has been tiring and difficult. My arms have been giving up on me and feeling strain. This week, it’s gotten even worse. I can’t even fold ONE SHEET! I have to put it down half way through the process. One sheet! I was telling my husband that I wish he could feel what I’m feeling. I wish everyone who expects too much of me could feel what I’m feeling too.

I really DO need to stop working.

It became evident that what I’ve been wanting to do is truly necessary (finding them educational and therapeutic external centers) when I couldn’t even brush one child’s teeth without stopping in pain. One set of teeth! But my arms got tired and were extremely sore. Just brushing my son’s teeth so I had to stop and rest a while. What kind of a life is that? Thats the fatigue we mean. It stops us moving. It makes us wonder if we won’t collapse. It is overwhelming.

I need a second mother for my children. A kind, honest, gentle, able to drive, patient, mother to teach. I don’t think they make others like me. I haven’t even met anyone who doesn’t lose their temper at their own children or relatives. How much more when dealing with mine?

Clothes and shoes constantly left outside overnight to get rained on, or for heavy dew to fall on. Socks getting lost by my mine year old daughter. Underwear thrown out the window by one of the middle two. Daughter still making holes in her clothes. Eight year old throwing food down the toilet. Both extremely easily distracted. I’ll tell my son to go wash his face and he will stop to ask me why babies use pacifiers instead of doing so. Then he will forget I ever told him to go. Or my daughter will go get undressed but you’ll find her sitting down with only one sleeve off, reading a book.

I need someone like Job.

I need them NOW. So yes, it’s been up and down. I’ve managed to divert some anger and get my unpredictable girl her to be less violent. I’ve verbalised her feelings but told her straight after that we are kind and gentle and hug each other, we don’t push. Sometimes she hears and then squeezes me for a hug. Sometimes not.

Homeschooling while terrible unwell is another level of torture. I can’t even finish the next day’s lesson and therapy planning as I’m so in pain by 20:30. Hoping for a breakthrough. And a break.

In the meantime, I grasp and clutch to myself every comedic moment and every insane second. Like my four year daughter who only partially listens when I’m teaching -doing what I tell her, but also planning her own thing. Above, she decided on her own that while I’m reading to her, she’d suddenly draw two C’s. And she did. I’ve never had a student like her before. She marches to the beat of her own drum in every single area of her life. It’s funny. It’s tiring. It’s frustrating when her drum beat is out of sync with the symphony I’m trying to conduct. When she wants to do something totally out of line with what she’s meant to do. And she does most of it, with a smile and easy confidence that her wish is not disobedient nor distracting.. and never negative. So what if she can’t say without stopping to want a very specific book we can’t find and she won’t eat until we find it and put it next to her? So what if she sometimes even coughs and splutters a because she’s chewing and singing at the same time so some food goes down the wrong pipe? She will be warned by me. But she continues and then with watery eyes say, “Oh, I’m choking!” 😩🫣Her not very talkative sister does the same too. She will jump and spin with food in her mouth and sometimes cough and splutter when the food goes down the wrong pipe. I don’t know which is worse! Their extreme activity instead of eating- wondering up and down and going around to find toys and books. Or the middle two and how they will take an hour and still not finish a small bowl of food. And it’s not because of the ADHD meds that reduce appetite. They do that even without the meds. To feed them less would be to under feed them. But to make them sit for three hours would mean I don’t get time to teach. So I end up telling them stop and learn then eat again after a short school lesson.

Told you I need a breakthrough.. and a break. The mind can only take so much constant stress before it breaks. And that’s a mind in a healthy body. Even healthy parents of even one neurodivergent child can’t cope if the child is challenging. And I understand it. I need a break. We all need respite. We all need hope and help.

Uncontrollable

Grace by any other name1 Comment

I told my friend that my worry with my angel is that she will fidget with the dressing. The very next day, she’d scribbled on it with pen. She claimed it had been itchy. Thankfully I saw no red ink directly over the wound, but it was worrying.

Thursday, it had fully closed up. I put the dressing on to KEEP it safe and told her that if it was closed in the evening, she could finally bath the next day. That same afternoon, after days of the dressings always staying put, the dressing was now off the wound. I asked why she’d taken it off. She said it “just fell off.” Yeah right.

This is our worry as her parents and as her aunt (My friend who video calls them as much as she can.) We worry that her cognitive issues and her behaviours will slow down her healing.

And what do you know? Friday morning I arrive at the hospital early for my lung CT scan and I phoned home to check how the little ones were as I left before they’d woken up. The wound was now open. And I saw when I got home to dress it after they put on a normal plaster as a covering but no cleaning, that it’s back to oozing something. It had moved to blood and then had remained dry. Now we have a setback.

On Monday, the surgeon warned her that the wound NEEDS to close up and if she damages it, she slows down healing terribly as there’s not much blood flow to that area of the leg. And that if it stays open, the higher the chance of infection again. Plus..she can’t bath till it’s closed- my other issue with it! And I have to keep cleaning it, dressing it sometimes twice a day. And guys, that puts extra strain on me- the bending over. It needs to heal.

Meanwhile, we have another issue.

https://www.youtube.com/watch?v=bddqnnyD6c0

That’s the video version but long story short, her brother has an infection and I need to sort him out twice a day and medicate. As I was doing his evening dressing yesterday, I caught my girl poking into the wound, and then telling me that her leg is sore. (She had stopped complaining of pain.) She didn’t know I’d seen her fiddling with her knee. So I reminded her that it’s a pity she’s not healing because now there are fun things she’s missing out on. (My hope being that the thought of the things she’s missing out on will overcome her huge attention seeking behaviour.)

Her dad went to go chat with her sick brother later, and he too saw her using an item to poke at her knee. I can’t recall if he said pen or what. But she’s at it. Just as we feared. She is sabotaging her own health and she’s only nine years old.

Tell me it gets better. Tell me these kinds of pathologies change, improve…I don’t know anyone who has had the prenatal history she has had. Well, I know the ones who had physical deformities and intellectual disabilities. But not this constellation of issues. It’s too much. The day time urine and night time bed wetting, the learning disorders, the struggles with academics, the self harming. All in one child whose only current label is “ADHD.”

If you’re a Christian, please pray with me that her knee heals fully. You can even pray that her behavioural issues calm down too. Today it’s still open. And I will bribe her too. Tell her we will celebrate with her favourite treat when it closes up and remains closed for three days. I’ll do almost anything. As the other surgeon we saw in ER said, “We need to save her leg.”

And me? We’ve moved into February. I was meant to work on getting my facet block injections in January. But I needed to be sure we wouldn’t have post op appointments etc. Instead, we now have to solve my daughter’s other issue. Moving rib in her left side right at the bottom. Moving and causing lots of pain as it rubs against the bones- I think I mentioned this. I don’t think I’ll ever get those injections done. And it’s spooky! The doctor has never ever had a patient with moving rib cartilage before. He even called in his other associate and she too had never felt such a thing in her life. He doesn’t know the next step. I’m waiting for him to get back to us after he speaks to a cardio thoracic surgeon and to the surgeon who did her knee operation. If I hear nothing by midday on Monday, I’ll search for surgeons myself. But I’m scared we will need to operate. And ribs and surgery are a whole new ball game for my daughter. I’d really thought my children had escaped living my life of a childhood marred by sickness, pain and hospitalizations. It seems not.

And I am sad.

ADHD is Annoying

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So says my eight year old ADHDer. I am pretty sure I’ve mentioned how she is very hard on herself. Extremely hard on herself about her perceived weaknesses. From ADHD itself and her forgetfulness, to the common co-morbidities that tend to come with ADHD-the learning disabilities or challenges, they all combine to make her feel like a failure. I’m one of those relaxed parents. It’s not about me. There’s a lady I know whose child was obviously neurodiverse in some way. She recently had the child assessed because of the struggles she was having when helping the child with homework. In her words, “I am intelligent. I got frustrated thinking I have a child who’s slow! Helping her was just too frustrating.”

I’m definitely not dumb, but my biological son’s being behind by a year doesn’t reflect on me. I just taught him according to his ability. No skin off my nose! And same with my other children. Their (dis)abilities are about THEM. “How can I help THEM do better? Is it possible? If not, what can we do instead? How do I make this less stressful for them so they don’t feel stupid?”

And so, I changed curriculum to one I’d seen recommended by Christian parents of neurodiverse children. And I started a grade level below where she’d been struggling, working as slowly as possible, and ignoring or turning a blind eye to the problem areas -such as number reversals like the ones below.

She’s eight years old. We use computers s lot these days. And…She’s eight. We will trace every now and then, create the numbers and letters out of play dough, and one day, it will click. Why stress her when I know the number she is trying to write?

Slightly tangential but relevant. I thanked a friend today for how she approaches parenting and what she shares with me. She too is an adoptive mom. Her children are neurotypical and participate a host of sports and dance and do well! Yet what she focuses on is worrying about her son playing rugby and getting hurt-not on whether the team won or not. She worries about her daughter being tired and over worked. HOW she does in her dance competitions doesn’t matter to her. The prizes aren’t important. She just enjoys knowing her children are happy. I can definitely enjoy her updates about her children.

On the other hand, you have the mother also of neurotypical children who’s always posting photos of her “beautiful” children taking part in this and that, their amazing achievements and the awards and prizes they got. For a mom like me, even before I had differently abled children, I couldn’t get behind such parents. I remember a relative telling me their child came first in their class. My immediate thought was to retort, “So did mine.”🤣 (We are homeschoolers, so…😉)

My first two children were academic achievers. Even now they aren’t too shabby, they got one C for their IGCSE exams and the rest were A and my son got one A*. But I don’t boast about their achievements and never did. I taught them to read at a very early age. By age three and four, both could read three letter and four letter words. By five and six, they could read adult texts fluently. My sister-in-law used to visit, and she would take them to the aquarium and to the museum and when there were people around, ask my children to read the descriptions and information written next to the exhibits, just to shock and surprise people, who would invariably ask, “They can read!?? How old are they!?”

But I never recorded them reading. I never sent it to anyone. I never told anyone. Because my first aim in educating them is to have them become kind and helpful citizens, not amazing academics.

And so, with that mindset, this poor mom and her multiple posts about her children’s achievements was always going to do down like a lead balloon. Add the challenges I have with my neurodiverse children, and you have a mom who does not want to know. It hurts. It triggers a pain that goes deep. I hate that my children struggle. I hate that my daughter feels so bad about herself.

She asked me what the point is in doing a grade she understands when we will have to go up a level and she will flounder again. She had asked not to do Maths at all, because of her struggles. It took a lot to convince her to try. Even now, when counting in tens, whether looking at a number chart or not, she will say 80, 90, 20 even though she knows there’s a difference between 19 and 90. I just quietly drill, making sure I use the chart more so she sees it while saying it, and so I don’t have to correct her.

Yes, ADHD is annoying. The untidy room, the lost socks, the crazy wild movements that bump other children, the fidgeting that tears her clothes and pulls her hair out are annoying sometimes. But only she (and her teen sister who just doesn’t get it no matter how often I explain ADHD and give her videos to watch) feels annoyed by ADHD constantly.

I just feel a general sense of sadness, not annoyance. Last week she said she’ll never have a job. I asked why she would say that. She said she would be fired for forgetting things, and learning in university would be too hard for her anyway, so she wouldn’t even qualify for a job. I told her that there are different kinds of jobs. She could be a caregiver in a nursing or retirement home. But she then said she’d forget her duties. I told her she would write them down as she underwent training, and keep the notes with her. She would also see what other caregivers were doing and copy them. And if the elderly people could talk, they’d remind her too. And she would maybe even be able to explain to the boss that she has ADHD, and concessions would hopefully be made for her. Who knows?

I hope she will internalise it even though she doesn’t believe it right now.

“Mommy isn’t annoyed with my ADHD. She loves me and wants me to be happy.”