“Thank you for these poems, Mommy! They’re so amazing!” Said my little joy, Naynay aged six since the 16th of this month.❤️ “Thank you for doing school! I luuuurve school! It’s my favourite thing!”
My girl is proving to be a challenge. She’s perfectly at grade level for Maths for America, advanced for South Africa as we’ve always known and as our educational psychologist noted. She runs through every Maths situation and understands the first time I explain it then races through before I’ve given the next instruction! She has a wonderful memory. Glorious memory that even made her ten year old sister exclaim yesterday.
I have added some Cambridge subjects to her school life because she has such a thrust for knowledge. As I showed Ammy what she’d do next (I put them at the same grade level for Geography), and what her textbook looks like, Naynay exclaimed, “I’ll show you the two friends! There are two friends to teach you!”
I had no idea what she was talking about. But she sure did! We had only done two lessons in one day last week or the week before, and she recalled that there were two children in the textbook who teach! Her sister had leafed through the book and SHE hadn’t noted them!
So what’s the delightful problem?
She’s too ahead with her reading and spelling! I’ve moved onto a new grade for those even though she’s at the lower kindergarten level for Maths. But she smashed the first story in record time! So much for it hopefully being challenging!
But as you saw in the video, a child who can read the word “ awesome” is NOT going to struggle with these words below. Nor with the activity! She did this type perfectly twice before so I don’t plan on making her do it again today!
She noticed the box with her next grade level had arrived and she was excited!! So excited! “Look! Look! Our name! It’s our name on the box! The Good and the Beautiful!” (No, I can’t tell you why it’s “our” name.) She quickly grabbed her grade 1 reader. And didn’t even struggle except for typical ADHD stuff.
It’s glorious having THIS kind of problem! I’ve bought lots of books at different levels that will be stimulating and challenging. As she said about her list of words in her current curriculum, as she said about Maths, “This is so easy! It’s boring.” And so, on we move!
Warning- I have fellow autoimmune inflammatory arthritis followers so I am very real about what active Ankylosing spondylitis is like for people like me who aren’t responding to treatment. I will include nipples.
She has absolutely NO idea how this long running conversation of many topics has been a help. Because it’s through WhatsApp, I can do other things while still taking a chance to steal a glance and reply. And with the level of pain I’m in, the distraction has been perfect. I’m unable to lie down and rest because of parenting duties, so she’s seeing me through the suffering. If I’m in bed and the pain is this bad, I can’t even try converse because I feel so alone in the war that the other doesn’t realise or can’t imagine. But like this when I have no choice but to keep smiling and guiding and leading… I need the distraction.
It’s mental too. My daughters change their clothes multiple times a day. I had tried to keep their clothes in my wardrobe but I don’t have space. I have quite a few outfits like this- three are thick dresses/robes like this below, and four are onesies. Worn because skirts hurt. And with thick material, you can’t see nipples from a body that can’t wear a painful bra. I mention this because it sometimes comes up in AS groups, women asking if it’s just them who can’t handle clothes and bras. Some don’t wear bras at all. Some stay in their nighties all day… All because of the pain..
That means my own wardrobe space is filled with warm hoodies, normal clothes, and these space stealing style clothes. So I took some out and put them back in their wardrobes. Which then results in this.
I just want to cry. I hate mess. I can’t bend down to pick it up. I got a third of the room done via directing the owner of this shared bedroom and then went to see how much I could get if the other one whose owner was too sleepy and angry to be of much help. See those pink fleece tops by the bed? I reminded my girl to hang clothes, put others in the drawer.
Yeah, that’s not a drawer. It’s all day, every day, it’s draining and frustrating. And I’m tired, readers. I’m so tired of being single mom. Last Sabbath, there was someone constantly coming in so so often that I ended up texting their dad about how Andrew Yates was found guilty of killing her five children by reason of insanity and so avoided the electric chair. I told him that one of the things her defense pointed out was that she “only got two hours a week away from her husband and children.” I pointed out that I get no time away and she was healthy. And I added that I can fully understand the South African doctor who forgave his wife for killing their autistic children when they moved to New Zealand and she was alone with them.
He got the message and told them to sit down and stop bothering me. It should not need to go that far. Surely if people know we are constantly bombarded every day, they should automatically give you a break on a weekend? But anyway, it was a warning that this was unbearable, not that I was about to harm the children. because if anyone would die, it would be me. They deserve life. I’m the one who is stressed and sick. So I don’t understand killing the children. It’s selfish – in MY eyes. I’m the one with the problems, not THEM. Why should I get to enjoy life while little children lose theirs at my hands? Even during the worst of postnatal depression, my wish for someone to randomly come and adopt them, or for them to suddenly be taken into a wonderful baby care facility. Never for them not live. I don’t understand it. But anyway, that’s how it is. Constant drip drip of torture. Yesterday afternoon, my five year old came to the room barely 4 minutes after she’d already come and I’d given them activities to keep them busy, and I exclaimed, “Please, please don’t say anything. Give me one minute. Just one minute, then you can come back.”
She didn’t come back right then. She told her ten year old sister, “Mommy is begging for one minute to rest.” So big sister wisely told her not to come at all because what was the reason she was coming? To ask me to buy them a ballerina dress each. Definitely not something that would exactly make me rejoice! (What they don’t know is that I’d already ordered ballerina dresses and they’re on their way.)
Yesterday I realised that unlike a school teacher, I don’t get break times in the staff room. I’m with the pupils all day every day. I don’t get a drive home like my husband does, who then listens to an audiobook and basically ‘relaxes’ on the way home, leaving the work environment. We live work. There’s no holiday or sick leave.
My shoulder. My thumbs. My leg. My shoulder felt more pain just stirring a child’s bowl of maize porridge. Just doing that. That’s the pain the WhatsApp conversation distracts me from. The back. The hip. The SI joint. The heartache and loneliness.
You can’t feel lonely when you’re alternately laughing and being serious.
So next time your sick friend seems very amenable to chatting, even if there might be long pauses while they feed or medicate or remonstrate or hug a child, please do chat if you can. You have no idea the blessing your conversation might be to them. I crave adult conversation and I’m thankful. Yesterday, as my son ate a clementine, he – who knows full well that we believe God made fruit and fruit trees- asked me how people opened up the peels to glue the wedges together.
That’s the level of conversation I have sometimes. The adult conversation is a blessing. Think about THAT too if you’re chatting to a sick mother who is a shut in. Not all husbands ask about the children. Not all husbands ask about progress with spelling or even know the resources being used to help the children. Some husbands seem to exist only to tell their wives about THEIR work. You sincerely might be the only one who cares and knows and gets frustrated about occupational therapists. A story for another day. If she’s chatting, she might be chatting not only because she loves you, but because she needs you.
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.”
But first, let me share a bit about school work. Someone commented so positively about how committed (or something like that) I am to a project I’m currently doing on YouTube (Studying the book Adventist Home) despite everything else I’m doing.
It meant a LOT!
So, here’s a snippet. My PDA daughter is VERY hard to teach. Interesting..She is truly a version of her mostly non-speaking twin! She does what she does, but differently. Both girl won’t sit down and discuss or be led in discussion or even naming items in a book or on a screen. I can’t teach like I do my other children. And my other children are already harder to teach than my first children. At their age, I could plonk a textbook in front of them, cook while they answer and then go through the answers with them. They were self teaching as soon as they could read. And they read at age four and three. We could do crafts with ease. Snakes looked like snakes. They understood verbal instructions and had hands that cooperated with their brains and with my instructions.
Today, it’s difficult. So difficult. I frequently regret doing crafts and these aren’t even difficult crafts. I do much of the work myself and even then, they can’t stick things down well. They don’t know how to place ladybug legs … And it’s all different children with different problems and only one of me.
Can you tell I’m burning out??
So, back to my ‘newly diagnosed but long known to us as our fourth autistic’ four year old. She had occupational therapy this week! The first time ever!! Some celebrate “First day at school,” I celebrate being able to attend therapy. Something my most desperately in need daughter can’t yet do. She was excited but nervous.
She had had a headband on. When it was time to go, she asked to wear a blanket on her head, held in place by the headband. And this is an adult sized blanket she was talking about so I said no. She did the next best thing. Took a hat, put it on, put the headband on the hat, took a teddy and took the blanket. Armed and ready for war!
Thankfully, she enjoyed it. She enjoyed being “asked questions and playin’ a lil bit.” So, we are set for the next session.
As for home education? I’m back in the thick of hectic vision therapy exercises. Too many, people. I’m not well enough nor have enough time per day. So I’m doing something daily. Just nitpicking every single exercise. But, such is life. My girl can’t sit still when I’m talking, doesn’t listen, tells me she’s bored…
So, given how well she concentrates when watching my Bible story videos, and how well she recalls things I say, I decided to look at the upcoming topic, record myself (try finding peace and quiet with six children!), edit it, add visuals to explain things that might be new to her, add movement breaks either led by me or by online videos I edit into the video, THEN teach via the TV. Sometimes, I add songs. So I first have to find relevant songs -unlike the Bible videos where all the scripture tunes are made up by me- and then learn them and then find the karaoke version and sing along.
It’s a lot. And that’s just one subject.
But it’s rewarding. The peace and concentration is amazing. And the middle two get to learn with her as we watch.
I also did the below for them, which they’ve watched a few times. This was just a general education video I made up for them, not part of Neilo’s Science curriculum.
My title. I’ve had tummy troubles. Began with pain last week and has ended (thus far) with a case of the runs. My rheumatologist wants to be prudent so I am suddenly booked for a colonoscopy and gastroscopy. Something I didn’t want any time soon! The pharmacist said there’s a stomach virus going round. Given how I ended up in hospital for the vomiting one, this might just be the current bug and nothing worse. I hope it’s not a Coesntyx side effect. I want to give Cosentyx a shot at working. But it’s best to be prudent. If my NSAID or Cosentyx has caused an internal problem, better to figure it out soon.
And so, as the evening wore on today. and I felt guilty that I hadn’t done therapy, I called my middle two and made them do one each. I laughed when my son then asked if I wanted to see something he’d made. I replied, “No.”
This was unusual and never happened before! They both froze and said, “Huh??”
It didn’t compute.
“Mom always cares about what we’ve done.”
I giggled at them and then allowed my boy to surprise me with his “robot.”
You can definitely see what it is without my having told you what be created. 😉Right?
I love how proud he was of it. May they both ever be sure of themselves.
Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.
Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.
I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if
Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.
But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!
I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!
We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!
You can find the video I posted with more (poor quality photos) HERE.
Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”
This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.
Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?
I always feared trying to educate small ones of differing grades. That was before I knew the extra educational needs and learning disabilities that would befall us.
What is perfect in the day of a sick mother of disabled children?
Whatever it is, it is impossible to attain. So, I will live with “perfectly ok.” Today, was perfectly ok. I limped to go collect our hope in two bottles and went to the bank and then wanted to crawl home and stay in bed.
But it was perfectly ok that I couldn’t. It’s perfectly ok that I feel tired. It’s not only the AS fatigue, it’s also the good kind of tired from USING my body, not only from constant pain and fighting inflammation. I like that kind of tired, even as it contends with my body’s innate fatigue that I wake up with and fight against daily.
It was good be busy. I love being busy. I love doing. And so, when I finally lay down so I could plan the next Bible story segment and learn the memory verse so I could make up a song for the children, it was perfectly ok that that didn’t happen.
Instead, just as I dragged my laptop across the bed and put my feet on my hot water bottle, my littles came in, my four year old leading them. “Can we come lie down in bed with you?”
Well, there went the silence and rest I’d been hoping for! Instead, I got some cuddle time, some Bible video time in bed and random conversation with my littles. It’s a fair trade, right? After all, the most important thing is to help them develop holistically, and that definitely includes emotionally, doesn’t it.
I didn’t do ANY of the school work I’d planned. I’d planned it before I knew I’d need an hour and a half to go collect my daughter’s new med, the Strattera. My hope in a bottle. Last week, during our crazy hospital stay, I told the psychiatrist how my non very talkative angel can’t focus. I try show her pictures, she isn’t interested. We tried sign, she didn’t look long enough to learn the correct sign for the word meant. We speak, she doesn’t copy. We try the iPad, she only wants one specific app- Starfall- and only one specific session. AND she is all over the place anyway, bouncy and busy. Never sitting still.
The psychiatrist asked if we’d tried any ADHD meds. I told her that (based on the extremely judgmental pharmacist who castigated me once when collecting my son’s Ritalin) I’d thought I have to wait till she is six years old for an ADHD assessment, and even with age six, the pharmacist was angry at me and all the professionals who agreed that my boy who was six years old at the time (and our other girl) has ADHD. I wish he could live my life. I wish he could try learn with multiple thoughts buzzing in his head. I wish he could try memorise simple things with other things intruding and stopping him. Seriously, I asked my nine year old what one plus one is and she said two. I congratulated her and she said she’d been guessing.
After all these years, not much stays in the memory despite different learning methods and just rote learning, even with medication. Imagine without!
So, psychiatrist said Strattera should take 6-8 weeks to start working – if it does. It’s generally also sued for ADHD but nobody has ever suggested it to us. The psychiatrist hopes that then her head will be calmer and able to take in more, to learn. My nine year old asked if it would make her talk.
That requires prayer and at this point, a miracle. I told her that what I want is for our girl to learn to communicate, whichever format that may be in. We will learn with her. We just want her to be able to learn.
And so, we have two (out of three- the pharmacy only had two and our usual one close by had zero) bottles of hope. Our hope in a bottle. We need a huge dose for all of us! Today, it’s about my non l-talking angel who moved our hands to get what she wants except for the words, “Cereal, juice, peanuts and raisins, ice lolly..” She certainly has her priorities sorted.😉
If we look at our problems individually, we will faint. Sleepless nights of pain, my right hip seems to be fusing. It’s not behaving at all and it’s scaring me. My limping has increased even according to my trusty Apple Watch. To know I have such precious and so young (intellectually forever young and struggling) is daunting. I can’t do it NOW, how in the world will I do it next year?
And so, today I focus on our hope in a bottle. And I focus- for this blog post because sadly, life isn’t like that, I can’t compartmentalism all the things and problems – on the times she is happy. My daughter’s anesthetist asked why I was limping. I explained that I have AS. His response, “Please tell me Amarissa also doesn’t have it.” Then he did an impromptu check that I still have neck mobility after telling me that AS is an anesthetist’s nightmare. Yeah, I can’t forget the people who can no longer have surgery under general anesthesia because they can’t ve ventilated due to the curve they are stuck with. I also can’t forget the man who thought he was fine and when they inserted the breathing tube, it turned out bone had grown INWARDS into his throat. The bone broke off and unbeknownst to the theatre staff, he choked on the bone as it occluded his airway.
AS is a beast. AS with special little ones is hectic. I changed our angel’s diaper and wanted to cry. How will I do this next year? And the year after? Will she be able to comprehend if I tell her to kneel so I can wipe from that position rather than on her back? She doesn’t comprehend much now… Or, doesn’t react as one who does. “Give to Ella” means nothing. How will this work? And the siblings who also need lots of work? How will we do this?
I don’t know how. But we will. We have no choice. Somehow, we will keep going, even when we don’t feel perfectly ok at all.
And though we didn’t do any of the book work I’d planned, we did lots of physical and occupational therapy home exercises. We were happy. We laughed, we cried. I did laundry….We did stuff. And didn’t I say I like doing? What we managed, was perfectly ok.
Also, I got validation. I researched lots and read books by qualified doctors and researchers. I buy the supplements…The psychiatrist if we’ve tried magnesium, yes. Zinc, yes. All of them, we are doing. Not only for our non speaker, but for our ADHD girl with learning disorders who landed us in hospital last week. Basically, I’m doing everything that I can. The impossible is not in my hands. I need to learn to be perfectly ok with that.
She suggested we take our girl for an educational psych assessment. We’ve done two already in her life. I sent the report and our vision therapy report. Again, validation. I just wish I could ram into my thick skull the knowledge that I am not failing my children. It’s hard to believe you’re doing perfectly ok when the majority of your six are struggling so much. But we must.
Give ourselves the grace we would extend to others. Start with yourself first.
I went to look for new books at CUM bookshop at Canal Walk the other day. But they didn’t really have much. I chose maybe one book for my middle two, a biography for myself that I’ll lend the teens when I’m done with it, and then this card game.
My aim with educating my middle two, is to make sure that their foundation is strong. Given they are learning disabled, why force typical learning for their non typical brain? So I mix things up. Sometimes a page or two from their normal school books (Christian Light) and anything therapeutic I can put my hands on, always bearing in mind the specific challenges they have.
This one seemed perfect for working their working memory. They have four of each card so up to four can play.
Today was my first time using them with my eight and nine year old and we played SNAP! I chose 4 pairs of cards upside down so I don’t weary their brains, and they each would pick up two cards and turn them over. Then put them back upside down and the aim was to hope that the players recall where each card was so that if they pick a matching one, they go back and pick it.
And before I could even mention it, Amarissa asked if they have Bible verses on them! Win! So we discussed the animal, the number on the card, and the verse..and worked on working memory in such a fun way that they were sad when it was over.
Win!
As for my four year olds? Play includes learning so there isn’t much happening except my taking note of unusual speech patterns in my very talkative one and making videos that playfully correct them. And showing and modeling saying “Thank you” for my (mostly) non speaker who does ask for specific foods but hasn’t learnt to say thank you yet.
My twin above- on the left of the picture as we view it- constantly begs me to read to her. She’s obsessed with two books. A “Seek and Find” David and Goliath book, in which every left side page has some items for you to look for in the right side page (sheep, the sling etc) and God Rescues- a book about Pharoah and Moses. I laughed recently. She came to my room instead of going to bed. and asked me if I’d read to her. I said yes. She ran out my room and told her biggest sister who was waiting to get her to bed, “Ella, Mommy said, ‘Let’s read!’” I love that interpretation!🤣
She is super busy, always wants to be read to, to play… Her quiet alone time has reduced in length.
And my non- speaking angel?
She is hilarious. She is still happy without us. I knelt down next to her while waiting for her to be changed out of her shoes for nap time, told her I love her..and she gently pushed on my knees, showing me I must get out her room.
Her dad popped his head into her room yesterday as she stood by the door getting toys out the wardrobe. She saw him..and tried to shut him out by pushing the door closed.
They’re happy. They’re getting over a horrible cold that has kept their poor noses blocked and miserable. We adults know how frustrating it is to have a blocked but runny nose and we can sniff! They aren’t there yet.
Anyway! This was meant to be a ‘homeschool tip’ type blog so I’ll end here because my wrist is extremely sore. Stupid AS. I’ll share some more on my YT channel. It hasn’t impacted my jaw this time ! Look for @thandilocks
I’ve always filled in a green anesthesia form but yesterday was the first time I read it properly before signing.
Besides not drinking alcohol (I don’t anyway), operating heavy machinery, driving, making important decisions (that one I did know) and not looking after an infant for the first 24 hours post- anesthesia, I’m also not meant to use social media either!
I can’t agree to that! I’ll be texting my friends as soon as I think I’m coherent. Which I sometimes realise – after 24 hours- I wasn’t!🫣I’ll sign for not posting publicly for 24 hours.
Today’s the day. Remove the growth, check and test, enter into bladder, do some x-rays to check it, and do urethral dilation. Now, I’m not sure why this part. Won’t removing the growth already widen it back to normal? Or is he thinking there will be scar tissue in the way, or he won’t remove it entirely so he needs to widen the passage another way? I hope I remember to ask why when I get there.
Like, what are the chances? Both children?? 🤣It’s certainly motivation to keep going with vision therapy. And I can see us needing to add more sessions at the end of the scheduled ones! It was hilarious to me. I didn’t laugh out loud, I’m too kind. But it was bizarre! One turning nine years old next month, and the other is eight. Why us?😝
My other school aides are Reafing Eggs and Khan Academy and Education.com. That way, they don’t have to write. And as you can tell, I’ve not given them age-appropriate Marks work in ages. (Pun intended) Let’s try build a foundation… It’s shaky though. I definitely see dyscalculia in my girl. She can’t even do age 4 ‘Maths.’ So, we wait, watch, work slower, and figure out the way forward next year when we have a higher medical aid plan to pay the psychiatrist her Paed thinks our girl needs, and the occupational therapist all four younger children will need. I foresee my son doing lots of driving after all the assessments are done because united we’ve got my AS under control, the pain and fatigue will just be too much for me.
I’m also still working on fine motor work. I think I got this activity from The Ultimate Therapy Bundle. Making them ‘wash’ clothes and then use their fingers to grip and open and close pegs to hang the items. My tactile defensive boy was nowhere to be seen till right at the end. My mostly non-talking daughter dumped her sock into his water and wandered off looking for food. I had two out of four valiantly and happily doing the task though! So it’s a win! And I got to see my girl NOT like the grass on her bare feet. Ahh, sensory issues, we’re e familiar with those, aren’t we?
I also bought these Melissa & Doug dress up packs. I like how they catered for not just one skin tone and hair type. I think it will be too difficult for my not talking much twin, but she will enjoy collecting the small pieces-THAT’S her thing! But, she might surprise me!
He eventually realised the boots needed help 😉
And that, was part of our school morning yesterday. The day ended with my girl worrying that I “won’t survive the operation” and unable to sleep, scared of how much pain I’ll be in. All I could do was remind her that I usually get better. She allowed what time I’d be back, if she’d still be awake. I think I will be home before her bedtime… Needless to say, only the teens know that the urologist will be checking for signs of cancer. She already was sad that they need to cut the growth out. And that knowledge and worry are enough for her.
They said I should write a book 