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.
But it was much better than the previous night, and for that, I am grateful. I’d told a young lady who always checks, how scared I was to sleep. And you can therefore imagine how great it felt to tell her that I survived the night.
Resuming Rinvoq after the break meant that it felt as if I was starting it afresh, never took it. Every side effect was as bad as the first time. The stomach bloating and pain and weird creepy crawly intestine as if I’m in an IBS flare where it feels like you have a baby that’s kicking and making waves in your belly. The headaches. The swollen throat that closes up and causes bad snoring… (That one never stopped except for when I was off the treatment.) I can’t even make the Afrikaans g sound anymore. It’s quite scary what this has done to my throat. And the horrific dreams. Extremely vivid and mirroring in a gruesome way, the actual pain I’m feeling.
Thursday night was the worst. The children slept better so they didn’t keep waking me with their noise, which meant, I could sleep better. Too better. Remember, Rinvoq makes many of us feel anesthetized and terribly sleepy almost all day too. That night was so bad I contemplated just quitting and letting the disease continue taking my lung function and turning me into a ball of hellish, burning pain again.
I dreamt I was holding something which then turned into glass right before my eyes. The glass shattered into small shards. And pierced my right hand. Many pieces embedded in my right hand. As I used my left to try pull them out, pieces that were stuck in my left hand would pierce my right hand too. I looked at my fingers, full of little slivers of glass, the pain horrendous as the pain grew worse.
Then I woke up. In real life, I had pain from elbow to the tips of my fingers. My hand was swollen and stiff and sore.
Then in another, my husband somehow got a branch into my throat from in front of me as opposed to through my mouth and down. I couldn’t speak to tell him he was killing me. But then he realised and started trying to get the branch out my throat. But each time he tried to pull backwards, the branch would cut off my airway completely and I didn’t have the ability to tell him I was dying. Then he’d realise and lower it again. Then he tried again to remove the bean h, the roughness causing extra pain in my throat, but again I’d choke and have no air.
Turned out I was on my stomach and my throat was so swollen that when unconscious, it wasn’t staying open. It was painful and swollen feeling in real life. THAT was when I truly started believing the treatment will kill me before my diseased lungs do.
There were other dreams when I tried to sleep. I couldn’t roll over but on my stomach I was being smothered and dying.
But, last night was normal. And so, I hope that today will be normal too.
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.
I’ll start with unloving mothering before I go into special needs mothering. Readers know the two posts I typed about the missing Joshlin Smith. Her life imprisonment sentence even made it into international papers so I won’t go into that except to say that I wish we could get the TRUTH out of her so everyone who loved Joshlin could hold a memorial service for her. (You can tell what condition I feel she’s in.)
I saw today that a mother reported her two year old as missing but it was quickly found that she had sold the child for R75 000 to a witch doctor. The witch doctor has been found and has shown police where he buried the little one.
AGAIN?? Just like Joshlin but for a much higher ‘price.’ But at least this time her little bones have been found and so has the evil witch doctor who practices death and darkness.. and that’s where I’ll stop.
It’s when you see things like this that you realise how perhaps loving your children isn’t normal. I know that most parents in my ADHD groups have yelled, hit, sworn at their children for doing things mine do. I’ve never done any of that. So hey, I can’t be too terrible a mom. I have not sold my child nor do I angrily scold them no matter what they do.
It is heartbreaking that while I stress that our twin is hardly eating vegetables, preferring dry cornflakes, dry pasta, noodles and grapes, some are ok with giving their children to a killer. Clearly like Joshlin who was neglected and abused, this little one also must have not been loved even while in mommy’s care. It beggars belief. The wrong people keep falling pregnant.
And unlike stereotypical African society, I’m not ashamed of them nor their challenges either. God has a plan to fulfill through them and my job is to ensure I allow Him to work.
So, we move onto our special needs parenting wins. I became weary of telling my teens to TALK to their last born sister. Just because she doesn’t answer doesn’t mean she can’t hear. And just because she’s intellectually impaired doesn’t mean she’s deaf, mute and blind. She is easier to reach than the great (though unlike our kids) neurotypical Hellen Keller. But they didn’t. So I’ve carried the torch alone. Naming things over and over. Naming what she pulls my hand for. Naming anything we come across.
And this week, she asked for one of the things I always name which she had never said before. “Cornflakes.” She said it verbally. First time she’s said the word cornflakes!
Same with popcorn. I made up a video for the word “questions,” and one segment included me asking, “Who ate all the popcorn?” And then I show a video of her eating popcorn. She stopped pulling me to look at the TV screen and repeated another word she’d not said before, “popcorn.”
I am so grateful that I experience little moments of knowing she is taking in what I’m saying. Well, at least she’s clearly taking in the names of things and people.
Another victory is water. She isn’t into water, but her twin is now finally drinking plain water. With her non-speaking twin, I have an eighth of the cup filled with fruit concentrate and the seven eights made up of water. So it was awesome that a while ago, little miss in the photo above drank a cup of water and sometimes asks to drink the entire cup of water I give her to swallow her tablets with. (Hoping that makes sense!)
Another victory for the other three is SPINACH! They don’t like the texture so I chopped up potatoes that I didn’t peel, boiled and mashed them with spinach, a touch of garlic and turmeric.
They finished it all! I was pleased. It’s a struggle getting veg based iron into them. And as for little miss, basically impossible. She likes smoothies though, this one was blueberry smoothie. Maybe I’ll add spinach leaves so they all get good quality iron besides the supplements they’re on .
Held prisoner by his non speaking sister.
There’s a lot I could say about motherhood and homeschooling but I’ll end with this because I recorded a vlog that I haven’t edited etc so much would be repetitive if you are subscribed to my channel. SnapType Pro has allowed my son to ‘write’ numbers and letters we couldn’t decipher before. I first bought it for our ten year old and then another for our son. Well worth it. You take a picture of the page you need to fill in or write on and then you type the answers in the blank spaces. It’s made school less stressful.
I’m thankful that my six children are happy, loved and safe. I wish all were guaranteed that. Safety, thoughtfulness, and true love.
Until that day comes when only Love will reign, I will try advocate, answer about how I parent without the yelling, and pray for our children. Their mothers are letting them down. May all loving mothers I know keep on keeping on. Jesus said the angels are always telling the Father about what’s being done to His children. They are special. Strength and patience to parents of neurodivergent and neurotypical children. We have to do this. We have to love. Maybe our love will overshadow the love other bad things going on and we will be our own personal feel good stories.
I have a channel for kiddies’ Bible stories. It’s reverent and sticks to the actual story- no weird additions that aren’t true and uses as close to realistic images as possible instead of cartoon characters that secular kid shows also use.
And what has kept me posting the videos (I creat them for my children but Ammy asked me to post them online) are two little children who aren’t in my family. Well, one is a dad of children and the other is a little girl who told my husband to tell me never to stop.
What are YOU saying to people you meet? What message is it giving them?
I don’t know if I shared here that the talking girls (age ten and five) cut their locs. They kept cutting off a few despite repeated warnings to stop and my hiding scissors. But nope, they kept sneaking into my room to get scissors, or took them from their brother after he used them for his school lesson and kept cutting here and there till my ten year old Amarissa had a full front section with no locs at all. After all the months and years of pain from standing and creating them and then tightening them monthly over weeks as they are impatient, I had to cut them off. I won’t lie, it hurt. Each loc represented a lot of pain for my shoulders, pelvic bones and back, and a lot of time wasted.
They had been very eager to start afresh but a day after their dad shaved a few bits off to make their hair more even, they regretted it bitterly. “Mom, why don’t you also cut your hair so you are like us?” And cries of, “Why did we cut our hair?? When will it grow again? Can we have locs now??”
So, they started putting all manner of things on their heads to pretend they had long hair. Stockings, bonnets, petticoats. It was crazy. I told them their hair was fine just as it is and that nobody thinks less of them just because they don’t have long hair but it didn’t settle in. They never saw any children with short hair.
On Thursday, I pointblank refused for them to walk out the house to go to the playground wearing stockings on their heads.
The girls returned and my ten year old tells me how the nannies, domestic workers and dog walkers they usually meet there, (“Our FRIENDS!” they always tell me) were surprised to see their hair.🤣They said their hair looked good and they clearly take great care of it.
Since then, since those STRANGERS, said what they said, they no longer hide their teeny weeny Afros. No more embarrassment, no more shame. I am so, so grateful that Black people (We notoriously aren’t into keeping our hair natural and without braids or wigs or weaves) managed to do what I couldn’t. They reminded the children that what matters is healthy hair, not length of hair. And all that is NEEDED is for it to be taken care of, not made to look different or thinner or longer. No traction alopecia from tight cornrows, or braids etc.
Their hair is beautiful just as it is.
Priceless.
So, what will YOU say to someone today? Especially to a little child? 🥰
Imagine if I’d just brushed her complaint aside. I’d feel like a right old dummy, now! A real nincompoop. But, I did put myself in her shoes and so I can gladly say that after today, I’m glad I did understand and also express a verbal rolling of the eyes at how ignorant people can be.
I’d met her some years ago. She’s one who invited me to her shared apartment when I started going to the church nearby. So much better for me so I can actually converse instead of wondering what the children are doing. And I enjoy listening to new people tell me about themselves.
One of the things was her prosthetic leg. She’d been in a terrible vehicle accident and had to have her leg amputated from the knee down. She had a great fake leg and they’d made sure it was as close to her skin colour (Zimbabwean Shona lady a few years younger than me) as possible. She therefore had a disabled badge to hang in her car, and though the leg was very good quality so didn’t hurt much, it did help to park closer to the entrance when the shopping centre is big or when there’s no parking nearby or when she’d been walking for a long time before going to the shop so was starting to feel fatigued.
But, because she could walk so well and tended to wear jeans sometimes, people didn’t always know she was disabled. And so they ‘judged’ her a lot. And thus, I couldn’t relate but I could imagine how exasperating it would be to have to prove yourself to strangers.
And so today, for the third time, it was MY turn to have to prove myself. I went to the hospital to collect my ten year old’s prescriptions and as I left the car in the rain, a security guard came running behind me while another man started shouting, “You can’t park there!” The guard called me and kept gesturing at the car without saying anything, so I too silently looked at him as I flinched in the rain. I wasn’t going to make it easy. It wasn’t his job to confront patients but to check that their cars had the disabled badge visible on their dashboard.
They came together and I told the one older man that not everyone who is disabled is in a wheelchair. I was so angry. It’s cold and rainy and the man I’d hired to do the driving on fine days, doesn’t know how to take public transport to get to work so I had to go up and down while in a flare. And now you’re making me stop in the rain? When I left home it had stopped raining so I hadn’t brought my umbrella nor worn any kind of extra jacket.
I told them both loudly that I don’t need to be in a wheelchair to be classified as disabled and they should check my dashboard. I turned to the black security guard and told him he knows where he should look instead of calling me.
The older man, Coloured guy, lit up a cigarette (SAVE ME!) while saying he understands because he’s got fibromyalgia and sometimes he has bad days. I told him my amputee friend goes through this nonsense and I have Ankylosing spondylitis. He was taken aback, “ Oh! Oh no!”
Oh yes! Leave us alone and check for the disabled badges, man!
I got back home after doing the pick up and straight into the clutches of Ratie who said her infamous word, “ Car..car.” And so back out I went, my trusty son always coming along too. He’s cool man. Despite his constant interruptions to ask what a line means, he is also very flattering. He likes my singing and says so, (Aww, love is deaf) and today I kept telling my girl I love her as I buckled her into her booster seat, and told him, “ I love you too.” To which he replied, “ Aww, you look so cute. When you said that, your cheeks looked so cute.”
Hahahaha.
And so, we reversed as we sang the first song together.
She’s just come back for car ride number three but Violet is trying to hold the fort. 😅I’m even too scared to turn the heater on. I’m scared she’s too close by and will run in and grab me again. She’d come and I told her to go play and then locked my door.
Let’s hope she is. These bones, even my ribs, are crying.
And so, that’s why I’m glad I did get angry at the faceless people my now back in Zim friend had told me about who didn’t want to just keep going about their business but got into HERS uninvited and unnecessarily.
She’s coming back…🤣🙈 Stove on low and out we go..again.
Autism and ADHD aren’t famous for helping their ‘victims’ sleep well. I have three out of four who don’t go to sleep well, don’t stay asleep, make hectic noise… Some mornings I don’t get to study my Bible because noise woke me and continues. Sometimes there’s boredom and one wakes the other. It’s just constant awareness of ‘something will disturb the night and/or early morning.’
And then when you wake up, you have my chubby five year old and her driving commands. On weekends, her dad takes her on a few of the drives. At first he’d tell me, “Just say no!” when he’d see me reach for my car keys. Now he sees why I don’t. The screaming and crying destroys everyone’s peace. Agreement leads to peace. And added pain for me in my bad leg.
So, we have Violet who comes in too often. The agreement was Monday- Friday and two Sundays till 1pm a month, but she tends to come in on more Sundays than she should! And my nine year old doesn’t help. I cringed one Friday when he said to her, “So we will see you on Sunday??” And she agreed with him! I reprimanded both of them. But, they’d made their agreement!
Some days, I want to cry. Since yesterday, I’ve been in a flare. Bones aching, fatigue back, almost didn’t reach my 10000 steps. Morning has broken and my problematic right hip is not giving me s break despite my 200mg Tramahexal. And that’s on top of the tongue that has two sores on it that are so bad I’ve asked the rheumatologist for help so I can eat.
I agree with the rheumatologist. The stress must be causing fibro issues. But wow, it took three full months for my tongue to obey my brain. It was scary. So I’m never touching Lyrica again. Which means that though I’m already on an antidepressant because it helps with nerve pain too, I wake up with a sinking feeling or am woken up by someone that will cause a sinking feeling that lasts throughout the day.
Why?
“Another day has begun. What will I be putting my body through today? How many times will I reprimand fighting children? How many times will I have to deal with my two PDAers demands and my ten year old’s struggles and my non-speaker’s demands? How do I get out of the multiple drives?”
Violet tries so, so hard. A few times, my girl comes to me saying, “car..car…” and then she is content to play and Violet watches her to ensure she doesn’t hurt herself. Other times she pulls her brother onto a scooter (really meant for younger chosen but her likes to ride on it anyway) and he has to keep riding around. One time, that ‘play’ caused her to speak! I was in there watching them just before I made lunch, and every time he stopped riding, she would pull the scooter. At one point, she shouted, “Good job!”🤣
Sadly, more often than not, she can’t be distracted or doesn’t allow herself to be distracted from her driving urge. And so, if I don’t go, if I try rest, or if I try continue working, it will descend into screams which cause her twin to cover her ears and ALSO scream. And then she and Micaiah complain to me that “she’s making noise!” And if I am in the loo (my bladder etc issues are back and I refused to catheterise myself daily so I have trouble with that aspect- taking ages to relieve myself) she will become so upset that there reaches a point where even when I am now driving, she can’t regulate anymore.
So..I’ll have to do it and have to when she wants. This morning, I’m truly dreading this day. But also, thankful that for a few hours, I’ll have someone in the house who wants to take the burden away.
My children’s photographer when they are at the playground.
Good job indeed. Earned me a few minutes’ rest and time to make their lunch without Little Princess pulling me or pulling plates or dishes out my hand because I’m not going to the “car.”
By my ten year old (washable, don’t worry. I use washable markers so I can get some hand strength going on when they wipe it off besides the positives of writing on an upright surface anyway)
It’s the little things. The little things that mean so much to us mothers of special kiddies. It’s like when your neurotypical baby takes its first steps or suddenly reaches a milestone they hadn’t yet reached. I used to praise my babies for “sitting without falling!! Good job!” Or “You got off the chair without Mommy helping! Well done!” To which my husband would respond, “Look! I just got up. Why can’t I get praised too?”
You can imagine the withering glance I gave him.
All new moments are worth celebrating. And so, when the same moments took longer for our next ‘set’ of two, it brought slight worry. (Amarissa crawled and walked later than normal and never crawled typically, but her babbling was ok but more importantly, her brother who we adopted nine months after her, was VERY obviously not ok that her small late milestones were ok.) That was a mouthful between those brackets! I was just glad I COULD also celebrate that she was walking.
With our fourth, our second of the second ‘set,’ it was the lack that was glaring. It was the sudden realization that it wasn’t ME who was suddenly unable to bond with him which meant I was a bad mother, but it was his inability to look me in the eye. It was HIS looking anywhere but at me as I held him, bathed him, fed him. It was his leaning away that meant I could not hug him to myself that caused the lack of closeness.
Fast forward to this week. It was his lack of engaging when I read a book, that meant we had no joint mother and son moments at all. The lack of babbling, the lack of turning when I’d call his name but perversely, the screaming cries when I coughed in a different room. The idiot doctor who didn’t listen to me about what we came to confirm was sensory processing disorder and global developmental delay and autism. and coldly told me, “He’s fine. There’s nothing up with him. But if you’re worried about his hearing, you can get him tested.” Despite my telling him how sound caused him to wail.
He was my first autistic to not enjoy being read to. But it’s my last autistics who have forced me to go about reading to them in a totally different way.
Like this below. How gratifying that the same boy who didn’t utter a word more react to a word, has words that he voluntarily speaks today. The one who didn’t react to anything, has “favourite” parts.
Yesterday morning, this one below came to me, “Mommy! Let me ask you a question. I was saying my vowels in bed today. Listen, a, e, i , o, u!” I haven’t had the heart to tell her how often her questions are actually statements. Not in that moment of great excitement about VOWELS, of all things.🥰
This special needs parenting job has hard times. I’ll focus on just one aspect for now. You seriously want to bang your head against the wall every single day, multiple times a day. I have FOUR children with ADHD bad enough to be medicated. But that doesn’t exactly strip them of their wonderful personalities, nor of their tormenting creativity. “Let’s cut this thing that shouldn’t be cut. Let’s paint with proper adult paint wearing our cream dresses that we will splatter with said paint. Let’s use the hair dryer and cause smoke to come out. Let’s use the toaster but instead of leaving it where mom said we should, let’s turn the temperature up to the max so that mom comes out her room wondering why there’s smoke everywhere. Let’s walk around outside on brick and thorns wearing only our pantihose. Let’s catch bees after having been warned multiple times, then stress our mommy when the stinger has to be removed from a finger and it stays swollen and sore for two days. Let’s argue about whose doll should be called what. Let’s tattle about who said what yesterday/five weeks ago or just now.”
It’s relentless mental strain. It’s so tiring keeping calm when you just want to scream. “They can’t be left alone.” They don’t WANT to be left alone sometimes, anyway. Not only once, my talking five year old has knocked on the toilet door then screamed and cried because I was “taking too long” for HER liking.
So, every positive is a huge bonus.
My girl who can’t say what she wants but couldn’t reason much either, is starting to understand at last. Remember how she spent over a year pulling me to do something impossible then attacking me because it was impossible? Those days are over at last. She doesn’t want much that’s impossible. When she wanted to try on her sister’s shoe – smaller than hers- it didn’t fit and she didn’t throw a tantrum, she just threw the shoe gently away. No tantrums. No violence!
And..she’s planning more and seeing how she can get things to work instead of being angry it’s not working out and then attacking me if I’m too slow (for her liking) to help her.
Speaking of “angel.” My ten, nine and five year olds who talk didn’t know why I call them angels when they age human. I tried T explain… Micaiah said this week, “I think I see why you call us angels. You’re trying to say we are nice like angels.”
But of course, there’s more to life than learning from books and play.
There’s also life. And so I leave you with the reason I’m now in bed with terribly aching feet and bones.
She played out in the garage for 31 minutes. No coming in for supper. So I kept sorting out the three that were indoors with their supper and medications, and had to go up and down doing the same for her! Meds, water with a bit of fresh juice (Still can’t get her to swallow water unless I give it in a syringe), meds again, grapes, meds, banana. In and out. I went from 9000 steps to 13458!
This is what she was doing in the garage. This is why I was going in and out. My life is crazy but sometimes it’s a good crazy.
The SHOP
I haven’t taken ALL the small ones to the shop alone. Not without the teens. Never, ever. I’ve gone with my talking three. But today when our minimally talking twin said her infamous, “Car. Kayi” I took them for her required three times a day drive and decided to just take them in to get treats.
I won’t do it again. I forgot that she’s a runner so I’d need to put her in the trolley. She also wanted to walk ‘funny,’ not facing forward but sideways like those crabs you sometimes see on documentaries. It was cute, but stressful because she also wanted to step over certain lines, so into the trolley she went. Which meant I broke the biggest rule my rheumatologist had for me. No LIFTING!!
We got out in one piece but I almost lost her when she tried to go running off as soon as I put her down after lifting taking her out the trolley.
But all’s well that ends well. I didn’t lose any child and they had fun. My BP which Rinvoq has raised properly shot up even more. On that note. I’m worried. The leaflet in the box states that strokes and heart attacks are “frequent” side effects. I emailed the rheumatologist about how my diastolic numbers (and sometimes my systolic rises above my norm but badly) have gone up. I expected the type of response I’ve seen other doctors give to their Rinvoq patients which is to either put them on anti hyper intensives like my nurse cousin wants her to, or to stop the Rinvoq.
My rheumy doesn’t believe it’s the Rinvoq. So instead she’s changed my anti inflammatory. I’d WANT it to be caused by the old anti inflammatory as that would mean I continue seeing if Rinvoq can put me in remission. But I’m not convinced. Especially given I then sent a WhatsApp to the Rinvoq NURSE who said it’s not common but it is definitely m a side effect of the Rinvoq.
So here I am. It’s been over a month of a raised BP. From a normal range of 68-74 diastolic (lower number) to this below and hoping it is the anti inflammatory though not sure. And it’s not like I’m taking my BP every day. Maybe it’s gone higher. She said I should continue monitoring it. It’s just too long , having an elevated BP and doing nothing, especially with the headaches that aren’t the bone pain.
We shall see! In this family, the entire school – teacher included- is special.🫣
A few times now, I’ve parked right in front of a Black female shopping centre guard. First I thought she was suspicious because I didn’t ‘look’ disabled, but my disabled badge halted any potential talk.
Today was probably the fourth time I’ve seen her, so this introverted ME who can’t speak isiXhosa fluently, asked her if she never takes leave; why she’s always there when I go. She laughed and told me she has six days on and one day off.
Then as I always do, I started worrying about her based on my condition. As in, I imagine that everybody suffers the way I do. When I came back out the shop, she clearly felt like talking so she immediately said something which then allowed me to ask if her feet, lower back and mid back don’t get sore from standing for so long. Six days in a row, to boot. She said no, her back has never gotten sore and her feet start complaining only on day five. She stamps around and shakes her feet in her shoes and is fine.
I told her I was relieved (because I truly pictured guards’ feet in agony. My feet started crying when I was 23 years old and working on a huge warehouse as a picker so I think because it’s my norm, my stupid brain feels bad for everyone else because it forgets it’s only MY norm.
She added that she loves her job. She said that with her salary she can buy a car, buy a house and be well fed. And then she said something too many of our African folk don’t want to understand. Class or status should not be what drives our decisions. Not when it comes to employment and getting out of the poverty cycle poor. She said cashiers might look ‘smart’ sitting there, feel like they’re ‘better’ at the tills, but she’s happy with the sun beating down on her when it’s hot, and rain when it’s bad because the salary is worth it.
I wish a relative of mine had had the same understanding. They felt certain jobs were beneath them, and that office/seated work is the best. That person became extremely poor as a teacher’s assistant in a township while the job I suggested pays more than double what this person gets.
Get rid of pride and just do what will help you (and your children) to THRIVE! (Illegal) immigrants do it often-taking a job ‘lower’ than the job they had in their home countries. ANYTHING to be able to send money home.
We need that same self forgetfulness and humility.
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.
They said I should write a book 