Video School!

Jumping with excitement over glitter glue!!

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.

Now Injection This Week

I still haven’t recovered from the infection to the point where the rheumatologist thinks it would be safe to unleash an immunosuppressant on me. “No redness and no swelling.”

Instead, I have white. The hole is no longer producing the stuff you’d assume would cause the current whiteness. Pus. I hate the word. Sorry for grossing you out! The joke itself has not closed up.

And I definitely do not have “no swelling.”

In fact, pain has increased.

Normal finger

Not so normal finger.

I really woke up hoping for the best today. Hoping to inject. Looking FORWARD to the stomach pain and bloating.

I always understood intellectually the cancer survivors who’d write how distressed they were that their white blood cells weren’t a high enough number for more chemo. A count reduced by the very chemo! Thats where I am. Enbrel has probably suppressed my ability to fight. But I desperately want it so we can know the way forward sooner rather than later.

I’m disappointed. Sad. Tired. I want to be pain free. I don’t want to get up from sitting on the toilet, or stand up straight from bending over the bin and scream from pain from those movements as what happened today. (Hopefully that’s the last time!)

I just want a bit of hope. Please 🙏🏾