Not Today, Karen!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now if only I could move OUT too!